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Member\tAPPROXIMATE\t42.697708\t23.321868\nBulgaria\tSofia\tNational Alliance of People with Rare Diseases\thttp:\/\/rare-bg.com\/\t+359\t878 323 748\tAssociate Member\tAPPROXIMATE\t42.697708\t23.321868\nBulgaria\tSofia\tNational Association for Child Support Congenital Hypothyroidism\t\t+359\t\tAssociate Member\tAPPROXIMATE\t42.697708\t23.321868\nBulgaria\tBurgas\tNational Association of the Patients with Growth Hormone Deficiency\thttps:\/\/www.facebook.com\/\u041d\u0430\u0446\u0438\u043e\u043d\u0430\u043b\u043d\u0430-\u0410\u0441\u043e\u0446\u0438\u0430\u0446\u0438\u044f-\u043d\u0430-\u043f\u0430\u0446\u0438\u0435\u043d\u0442\u0438\u0442\u0435-\u0441-\u0434\u0435\u0444\u0438\u0446\u0438\u0442-\u043d\u0430-\u0440\u0430\u0441\u0442\u0435\u0436\u043d\u0438\u044f-\u0445\u043e\u0440\u043c\u043e\u043d-1543573779219269\/?fref=hovercard\t+359\t887999928\tFull Member\tAPPROXIMATE\t42.504793\t27.462636\nBulgaria\tSofia\tNational Gaucher 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(Ontario)\tLymphoma Coalition\thttp:\/\/www.lymphomacoalition.org\/\t+1\t416-571-3103\tAssociate Member\tAPPROXIMATE\t43.589045\t-79.644120\nCanada\tVancouver\tPVNH support & Awareness\twww.pvnhsupport.com\t+1\t604 714 1222\tAssociate Member\tAPPROXIMATE\t49.282729\t-123.120738\nChina\t\tChinese Organization for Rare Disorders\t\"www.hanjianbing.org \"\t+86\t\tAssociate Member\tAPPROXIMATE\t35.861660\t104.195397\nColombia\tBogota DC\tAsociaci\u00f3n Colombiana de Pacientes con Enfermedades de Dep\u00f3sito Lisosomal\thttp:\/\/www.acopel.org\t+57\t 17561510 - 3477889 \tAssociate Member\tAPPROXIMATE\t4.710989\t-74.072092\nCroatia\tZagreb\tDebra Croatia\twww.debra-croatia.com\t+385\t1 4555 200\tFull Member\tAPPROXIMATE\t45.815011\t15.981919\nCroatia\tZagreb\tRare Diseases Croatia\twww.rijetke-bolesti.hr\t+385\t5 4812 846\tFull Member\tAPPROXIMATE\t45.815011\t15.981919\nCyprus\tIpsonas-Limassol\tAssociation of Patients & Friends of IMD \"Aspida 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Member\tAPPROXIMATE\t56.260133\t10.299919\nDenmark\tArre\tBl\u00e6reekstrofiforeningens\twww.lfmb.dk\t+45\t75 19 56 10\tFull Member\tAPPROXIMATE\t55.572021\t8.664659\nDenmark\tCopenhagen\tCCHS Danmark\t\"http:\/\/cchsdanmark.wordpress.com\/ \"\t+45\t25 45 63 93\tAssociate Member\tAPPROXIMATE\t55.676097\t12.568337\nDenmark\tAabenraa\tDanish Apert Syndrome Association \/Danmarks Apertforening\twww.apertforening.dk\t+45\t2216 3060\tFull Member\tAPPROXIMATE\t55.040852\t9.415159\nDenmark\t K\u00f8benhavn K\tDanmarks Bloderforening \/ Danish Haemophilia Society\twww.bloderforeningen.dk\t+45\t33 14 55 05\tFull Member\tAPPROXIMATE\t55.684199\t12.579543\nDenmark\tHerning\tDansk Forening For Neurofibrmatosis Recklinghausen\twww.nfdanmark.dk\t+45\t4541 1580\tFull Member\tAPPROXIMATE\t56.138557\t8.967322\nDenmark\tHellerup\tEhlers-Danlos Foreningen i Danmark\twww.ehlers-danlos.dk\t+45\t39 669155\tFull Member\tAPPROXIMATE\t55.736654\t12.569196\nDenmark\tLanga\tForeningen af M\u00f6biussyndrom i Danmark\twww.moebiussyndrom.dk\t+45\t87 73 08 38\tFull Member\tAPPROXIMATE\t56.391208\t9.894745\nDenmark\tCopenhagen\tForeningen for Ataksi \/ HSP\twww.sca-hsp.dk\t+45\t26 27 59 13\tFull Member\tAPPROXIMATE\t55.676097\t12.568337\nDenmark\tSt. Heddinge\tIchtyosis Association in Denmark\twww.iktyosis.dk\t+45\t56 50 86 7\tFull Member\tAPPROXIMATE\t55.308933\t12.387230\nDenmark\tGalten\tImmun Defekt Foreningen\twww.idf.dk\t+45\t21279615\tFull Member\tAPPROXIMATE\t56.154126\t9.907665\nDenmark\tRoskilde\tMCADD-foreningen\twww.mcadd.dk\t+45\t30259757\tFull Member\tAPPROXIMATE\t55.641910\t12.087845\nDenmark\tBr\u00f8nsh\u00f8j\tMitokondrie-Foreningen i Danmark\twww.mitokondrie.dk\/index.php\t+45\t47 36 19 12\tFull Member\tAPPROXIMATE\t55.703875\t12.499219\nDenmark\tSkanderborg\tPatientforeningen HAE Danmark\twww.hae.dk\t+45\t71 992 992\tFull Member\tAPPROXIMATE\t56.037247\t9.929799\nDenmark\tVejle\tPorfyriforeningen Danmark - Porphyria Association Denmark\twww.porfyriforeningen.dk\t+45\t757 23541\tFull Member\tAPPROXIMATE\t55.711311\t9.536354\nDenmark\tH\u00f8je Taastrup\tRare Diseases Denmark (Sjaeldne Diagnoser)\twww.sjaeldnediagnoser.dk\/\t+45\t3314 0010\tFull Member\tAPPROXIMATE\t55.659273\t12.242497\nDenmark\tTjaereborg\tThe Danish association of von Hippel Lindau patients and their relatives\twww.vhl.dk\t+45\t36 94 83 94\tFull Member\tAPPROXIMATE\t55.463613\t8.582441\nDenmark\tKors\u00f8r\tThe Danish Osteogenesis Imperfecta Society\twww.dfoi.dk\t+45\t58 38 35 14\tFull Member\tAPPROXIMATE\t55.325763\t11.149390\nDenmark\tHolte\tWilson Patientforeningen\twww.wilsons.dk\t+45\t20307035\tFull Member\tAPPROXIMATE\t55.817251\t12.472250\nEstonia\tJ\u00f5geva county\tEstonian Prader Willi Syndrome Association\twww.pws.ee\t+372\t566 668962\tFull Member\tAPPROXIMATE\t58.744169\t26.397933\nFinland\tHelsinki\tAssociation of Cancer Patients in Finland (Suomen sy\u00f6p\u00e4potilaat ry, )\twww.syopapotilaat.fi\t+358\t\tFull Member\tAPPROXIMATE\t60.169856\t24.938379\nFinland\tHelsinki\tFinnish Association of People with Physical Disabilities\twww.invalidiliitto.fi\t+358\t0 3 812 8317\tFull Member\tAPPROXIMATE\t60.169856\t24.938379\nFinland\tHelsinki\tFinnish Central Organisation for Skin Patients\thttp:\/\/www.iholiitto.fi\t+358\t103252576\tFull Member\tAPPROXIMATE\t60.169856\t24.938379\nFinland\tMasku\tFinnish Neuro Society\twww.ms-liitto.fi\t+358\t2 43 92 111\tFull Member\tAPPROXIMATE\t60.570810\t22.101407\nFinland\tVantaa\tHARSO-Rare Disease Alliance Finland\twww.harso.fi\t+358\t408206114\tAssociate Member\tAPPROXIMATE\t60.293352\t25.037769\nFinland\tHelsinki\tHarvinaiset Verkosto- Finnish Network for Rare Diseases\twww.harvinaiset.fi\t+358\t40 8238892\tAssociate Member\tAPPROXIMATE\t60.169856\t24.938379\nFinland\tTampere\tInclusion Finland KVTL\twww.kvtl.fi\t+358\t3 2403 111\tFull Member\tAPPROXIMATE\t61.497752\t23.760954\nFinland\tEspoo\tRinnekoti Foundation, Norio Centre\twww.rinnekoti.fi\t+358\t206385511\tAssociate Member\tAPPROXIMATE\t60.205491\t24.655900\nFrance\tCrouy\tAFMKT-France\twww.associationkystedetarlov.com\t+33\t0664025876\tFull Member\tAPPROXIMATE\t49.402803\t3.360417\nFrance\tParis\tAlliance Maladies Rares\twww.alliance-maladies-rares.org\t+33\t1 56 53 53 40\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tMALESHERBES\tAlliance syndrome de Dravet\twww.alliancesyndromededravet.fr\t+33\t6 12 22 59 56\tFull Member\tAPPROXIMATE\t48.295417\t2.414853\nFrance\tVillejuif\tAsociation  ISIS\twww.isis-asso.com\t+33\t1 42 11 52 20\tFull Member\tAPPROXIMATE\t48.792716\t2.359279\nFrance\tParis\tAss. internationale de dystrophie neuro axonale infantile\thttp:\/\/asso.orpha.net\/DNAI\/cgi-bin\/DNAI\/index.php?lng=fr\t+33\t1 45 85 20 18\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tStrasbourg\tAssociation \"Les Petits Courageux\"\thww.lesptitscourageux.net\/\t+33\t\tAssociate Member\tAPPROXIMATE\t48.573405\t7.752111\nFrance\tBeauvais\tAssociation AMS-ARAMISE\twww.ams-aramise.fr\t+33\t9 53 04 57 62\tFull Member\tAPPROXIMATE\t49.429539\t2.080712\nFrance\tGondecourt\tAssociation An\u00e9mies Dyserythropo\u00ef\u00e9tiques Cong\u00e9nitales\t\t+33\t03 59 05 20 71\tFull Member\tAPPROXIMATE\t50.543009\t2.983312\nFrance\tBordeaux\tAssociation Contre Les Maladies Mitochondriales\twww.association-ammi.org\t+33\t5.56.74.97.33\tFull Member\tAPPROXIMATE\t44.837789\t-0.579180\nFrance\tTarbes\tAssociation Craniopharyngiome Solidarit\u00e9\twww.cranio.fr\t+33\t28 33 64 74\tFull Member\tAPPROXIMATE\t43.232951\t0.078082\nFrance\tCusset\tAssociation de lutte contre l\u2019arachno\u00efdite, les douleurs neuropathiques, les pathologies m\u00e9ning\u00e9es et sacr\u00e9es et autres maladies orphelines\t\t+33\t4 70 96 05 84\tAssociate Member\tAPPROXIMATE\t46.131962\t3.456500\nFrance\tLa Boucharde\tAssociation de Prefiguration de la Fondation Denise Picard\twww.fondation-denisepicard.org\t+33\t4 73 95 11 60\tAssociate Member\tGEOMETRIC_CENTER\t45.094693\t4.786533\nFrance\tParis\tAssociation de Soutien et d\u2019Information \u00e0 la Leuc\u00e9mie Lympho\u00efde Chronique et la maladie de Waldenstr\u00f6m\twww.sillc-asso.org\t+33\t0687844669\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tEssey-Les-Nancy\tAssociation des Amis d'Anne-Lor\u00e8ne - Syndrome d'Aicardi\twww.aicardi.info\t+33\t3 83 20 68 09\tFull Member\tAPPROXIMATE\t48.708013\t6.234550\nFrance\tParis Cedex 18\tAssociation Des Groupes Amiti\u00e9 Turner\twww.agat-turner.org\t+33\t1 53 28 14 86\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tANGERS\tAssociation des Malades du Syndrome de Mccune-Albright\twww.assymcal.org\t+33\t4 91 22 88 69\tFull Member\tAPPROXIMATE\t47.478419\t-0.563166\nFrance\tBures Sur Yvette\tAssociation des Malades d'un Syndrome N\u00e9phrotique\thttp:\/\/amsn.ambitionrecherche.fr\/\t+33\t1 69 86 12 06\tFull Member\tAPPROXIMATE\t48.696893\t2.163977\nFrance\tOrsay\tAssociation des Malades souffrant d'Angio Oed\u00e8me par d\u00e9ficit en C1 Inhibiteur\twww.amsao.fr\t+33\t6 78 64 61 37\tFull Member\tAPPROXIMATE\t48.697161\t2.189617\nFrance\tIssy les Moulineaux\tAssociation des Pancr\u00e9atites Chroniques H\u00e9r\u00e9ditaires\twww.association-apch.org\t+33\t1 46 42 61 07\tFull Member\tAPPROXIMATE\t48.824531\t2.274342\nFrance\tMarsannay La Cote\tAssociation des Patients de La Maladie de Fabry\twww.apmf-fabry.org\t+33\t6 32 26 25 69\tAssociate Member\tAPPROXIMATE\t47.270302\t4.988667\nFrance\tLaveline devant Bruy\u00e8res\tAssociation des Personnes Concern\u00e9es par le Tremblement Essentiel\twww.aptes.org\t+33\t4 69 16 18 49\tAssociate Member\tAPPROXIMATE\t48.183840\t6.757597\nFrance\tM\u00e2con\tAssociation des POIC\thttp:\/\/www.association-poic.fr\/\t+33\t3 85 22 06 65\tFull Member\tAPPROXIMATE\t46.306884\t4.828731\nFrance\tBoulogne Billancourt\tAssociation du Locked-In Syndrome\twww.alis-asso.fr\t+33\t 01 71 10 85 13\tFull Member\tAPPROXIMATE\t48.839695\t2.239912\nFrance\tParis\tAssociation du Naevus G\u00e9ant Cong\u00e9nital\tnaevus.fr\t+33\t6.51.23.46.59 \tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tMarseille\tAssociation Fran\u00e7aise contre l'Amylose\twww.amylose.asso.fr\t+33\t491811716\tFull Member\tAPPROXIMATE\t43.296482\t5.369780\nFrance\tEvry\tAssociation Fran\u00e7aise contre les Myopathies\twww.afm-France.org\t+33\t1 69 47 28 28\tFull Member\tAPPROXIMATE\t48.629828\t2.441782\nFrance\tParis\tAssociation Fran\u00e7aise de la Fi\u00e8vre M\u00e9diterran\u00e9enne Familiale\t\"https:\/\/www.affmf.com\/ \"\t+33\t8 20 82 01 16\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tParis\tAssociation Fran\u00e7aise de la Maladie de Fanconi\twww.fanconi.com\t+33\t47 34 54 58\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tHirson\tAssociation Fran\u00e7aise de l'Ataxie de Friedreich\twww.afaf.asso.fr\/\t+33\t3 23 58 61 65\tFull Member\tAPPROXIMATE\t49.920092\t4.084192\nFrance\tSaint Alban Leysse\tAssociation Fran\u00e7aise de l'Osteodystrophie Hereditaire d'Albright\twww.afoha.org\t+33\t4 79 60 84 82\tFull Member\tAPPROXIMATE\t45.580773\t5.957843\nFrance\tAmiens Cedex 2\tAssociation Fran\u00e7aise de l'Ost\u00e9ogen\u00e8se Imparfaite\twww.aoi.asso.fr\t+33\t3 22 66 84 70\tFull Member\tAPPROXIMATE\t49.894067\t2.295753\nFrance\tNort sur Erdre.\tAssociation Fran\u00e7aise de Narcolepsie-Cataplexie et Hypersomnie\twww.anc-narcolepsie.com\t+33\t2 51 82 45 13\tFull Member\tAPPROXIMATE\t47.439552\t-1.500919\nFrance\tBoulogne\tAssociation Fran\u00e7aise des Dysplasies Ectodermiques\twww.afde.net\t+33\t1 46 03 28 33\tFull Member\tAPPROXIMATE\t50.725231\t1.613334\nFrance\tParis Cedex 15\tAssociation Fran\u00e7aise des H\u00e9mophiles\t\"www.afh.asso.fr \"\t+33\t1 45 67 77 67\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tParis\tAssociation Fran\u00e7aise des Malades Atteints de Porphyries\twww.porphyries-patients.org\t+33\t1 47 66 53 03\tAssociate Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tTHURY SOUS CLERMONT\tAssociation Fran\u00e7aise des Maladies H\u00e9r\u00e9ditaires du Rythme Cardiaque\twww.afmhrc.org\t+33\t3 44 26 09 92\tFull Member\tAPPROXIMATE\t49.357058\t2.324864\nFrance\tV\u00e9lizy-Villacoublay\tAssociation Fran\u00e7aise des Patients en Auto-Traitement\twww.afpat.fr\t+33\t09.67.40.33.75\tAssociate Member\tAPPROXIMATE\t48.787899\t2.190408\nFrance\tLe Havre\tAssociation Fran\u00e7aise Des Syndromes d'Ehlers-Danlos\twww.afsed.com\t+33\t2 35 43 46 77\tFull Member\tAPPROXIMATE\t49.494370\t0.107929\nFrance\tPont de l'Arn\tAssociation Fran\u00e7aise du Gougerot-Sj\u00f6gren\twww.afgs-syndromes-secs.org\t+33\t5 63 61 04 70\tFull Member\tAPPROXIMATE\t43.507006\t2.396729\nFrance\tCuvry\tAssociation Fran\u00e7aise du Lupus et autres Maladies Auto-Immunes\twww.lupusplus.com\t+33\t3 87 64 31 87\tFull Member\tAPPROXIMATE\t49.043265\t6.157361\nFrance\tPlaisir\tAssociation Fran\u00e7aise du Syndrome de Cornelia de Lange\thttp:\/\/afscdl.fr\t+33\t1 34 60 10 39\tFull Member\tAPPROXIMATE\t48.817223\t1.949075\nFrance\tAgnetz\tAssociation Fran\u00e7aise du Syndrome de Rett\twww.afsr.net\t+33\t0972474730 \tFull Member\tAPPROXIMATE\t49.382409\t2.384410\nFrance\tMaisons-Alfort\tAssociation Fran\u00e7aise du Syndrome d'Ondine\twww.afsondine.org\/\t+33\t1 48 93 59 05\tFull Member\tAPPROXIMATE\t48.801148\t2.429443\nFrance\tChenevelles\tAssociation Fran\u00e7aise du Syndrome Phelan-mcdermid\thttp:\/\/22q13.fr\t+33\t\tFull Member\tAPPROXIMATE\t46.728563\t0.652845\nFrance\tSaint Sever\tAssociation Fran\u00e7aise Lesch-Nyhan Action\twww.lesch-nyhan-action.org\t+33\t5 58 76 40 10\tFull Member\tAPPROXIMATE\t43.759137\t-0.574221\nFrance\tVersailles\tAssociation Fran\u00e7aise pour le Syndrome de Gilles de la Tourette\twww.france-tourette.org\t+33\t972 411 288\tFull Member\tAPPROXIMATE\t48.801408\t2.130122\nFrance\tBlaisy-Bas\tAssociation France Vascularites\twww.association-vascularites.org\t+33\t9 87 67 02 38\tFull Member\tAPPROXIMATE\t47.370969\t4.737877\nFrance\tParis\tAssociation Fran\u00e7ois Aupetit\twww.afa.asso.fr\t+33\t1 42 00 00 40\tAssociate Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tBouc-Bel-Air\tAssociation Francophone contre la Polychondrite Chronique Atrophiante\twww.afpca.fr\t+33\t4 42 22 63 50\tAssociate Member\tAPPROXIMATE\t43.451152\t5.413875\nFrance\tLa Valette du Var\tAssociation Francophone des Glycog\u00e9noses\twww.glycogenoses.org\t+33\t4 76 41 06 64\tFull Member\tAPPROXIMATE\t43.138240\t5.987584\nFrance\tSollies Toucas\tAssociation Francophone du Syndrome d'Angelman\twww.angelman-afsa.org\t+33\t3 22 09 63 28\tFull Member\tAPPROXIMATE\t43.206421\t6.024656\nFrance\tN\u00eemes Cedex 2\tAssociation Hemochromatose France\twww.hemochromatose.fr\t+33\t4 66 64 52 22\tAssociate Member\tAPPROXIMATE\t43.836699\t4.360054\nFrance\tMelun cedex\tAssociation Histiocytose France\twww.histiocytose.org\t+33\t1 60 66 93 77\tFull Member\tAPPROXIMATE\t48.542105\t2.655400\nFrance\tParis\tAssociation Huntington France\twww.huntington.fr\t+33\t1 53 60 08 79\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tRoquefort les Pins\tAssociation Hypoparathyroidisme France\twww.hypopara.fr\t+33\t0493361233\tFull Member\tAPPROXIMATE\t43.679421\t7.039090\nFrance\tToulon\tAssociation Ichtyose France\twww.anips.net\t+33\t6 22348035\tFull Member\tAPPROXIMATE\t43.124228\t5.928000\nFrance\tParis\tAssociation internationale maladies kystes Tarlov\thttp:\/\/www.aimktarlov.org\t+33\t\tAssociate Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tParis\tAssociation Kourir\twww.kourir.org\t+33\t1 42 00 40 43\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tMalakoff\tAssociation Maladies Foie Enfants\twww.asprehp.org\t+33\t6 75 55 91 65\tFull Member\tAPPROXIMATE\t48.817275\t2.297760\nFrance\tParis\tAssociation Marfans\twww.assomarfans.fr\t+33\t1 39121449\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tPlougastel-Daoulas \tAssociation M\u00e9dicalistes\twww.medicalistes.org\t+33\t2 98 41 64 59\tAssociate Member\tAPPROXIMATE\t48.374051\t-4.369108\nFrance\tAngers\tAssociation Microphtalmie France\thttp:\/\/asso-microphtalmie.org\t+33\t633937293\tFull Member\tAPPROXIMATE\t47.478419\t-0.563166\nFrance\tVendat\tAssociation Naevus 2000 France Europe\twww.naevus2000franceeurope.org\t+33\t4 70 56 52 33\tFull Member\tAPPROXIMATE\t46.159778\t3.347006\nFrance\tLes Loges en Josas\tAssociation Nationale des Cardiaques Cong\u00e9nitaux\twww.ancc.asso.fr\t+33\t1 48 87 92 57\tFull Member\tAPPROXIMATE\t48.764287\t2.140358\nFrance\t NEUVILLE en FERRAIN\tAssociation Neurofibromatoses & Recklinghausen\twww.anrfrance.fr\t+33\t\"3 20 54 72 76  \"\tFull Member\tAPPROXIMATE\t50.752034\t3.155492\nFrance\tCoutures\tAssociation Ollier Maffucci Europe\twww.olliermaffucci-asso.fr\t+33\t631209978\tFull Member\tAPPROXIMATE\t45.330534\t0.393162\nFrance\tParis\tAssociation Pemphigus \u2013 Pemphigo\u00efdes France\twww.pemphigus.asso.fr\t+33\t1 60 72 18 73\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tJavene\tAssociation Pour Aider et Informer Les Syringomy\u00e9liques Europ\u00e9ens R\u00e9unis\twww.apaiser.asso.fr\t+33\t2 99 94 38 35\tFull Member\tAPPROXIMATE\t48.319961\t-1.216631\nFrance\tL'ETANG LA VILLE\tAssociation pour la Lutte contre l'Alcaptonurie\twww.alcap.fr\t+33\t1 39 58 39 74\tFull Member\tAPPROXIMATE\t48.870070\t2.073650\nFrance\tVersailles\tAssociation pour la Lutte contre les maladies Inflammatoires du foie et des voies Biliaires\twww.albi-france.org\t+33\t\tFull Member\tAPPROXIMATE\t48.801408\t2.130122\nFrance\tParis\tAssociation pour la Recherche sur la Scl\u00e9rose Lat\u00e9rale Amyotrophique\twww.arsla.org\t+33\t1 43 38 99 89\tAssociate Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tCarquefou\tAssociation pour l'aide aux personnes concern\u00e9es par les maladies rares Muckle Wells Syndrome et CINCA\twww.amws-cinca.eu\t+33\t240 60 85 30\tFull Member\tAPPROXIMATE\t47.296241\t-1.486812\nFrance\tParis\tAssociation pour l'information et la pr\u00e9vention de la Dr\u00e9panocytose\twww.apipd.fr\t+33\t1 40 10 02 49\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tMeylan\tAssociation pour l'information et la Recherche sur le Syndrome de SAPHO\twww.airss-sapho.org\t+33\t6 62 57 83 12\tFull Member\tAPPROXIMATE\t45.209786\t5.777628\nFrance\tParis Cedex 6\tAssociation pour l'information et la Recherche sur les Maladies R\u00e9nales G\u00e9n\u00e9tiques\twww.airg-france.org\t+33\t1 53 10 89 98\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tBrigueuil\tAssociation Sans Diagnostic et Unique\twww.asdu.fr\t+33\t0625670882\tAssociate Member\tAPPROXIMATE\t45.953195\t0.860527\nFrance\tHINDISHEIM\tAssociation Scl\u00e9rose Tub\u00e9reuse De Bourneville\twww.astb.asso.fr\t+33\t09.70.44.06.01\tFull Member\tAPPROXIMATE\t48.468702\t7.639239\nFrance\tAngers\tAssociation Sos Desmo\u00efde\twww.sos-desmoide.asso.fr\t+33\t\tFull Member\tAPPROXIMATE\t47.478419\t-0.563166\nFrance\tLe Plessis Trevise\tAssociation Spina Bifida et Handicaps Associ\u00e9s\twww.spina-bifida.org\t+33\t1 45 93 00 44\tAssociate Member\tAPPROXIMATE\t48.808589\t2.573903\nFrance\tHordain\tAssociation Str\u00fcmpell-Lorrain\twww.asl-hsp-france.org\t+33\t3 27 26 17 50\tFull Member\tAPPROXIMATE\t50.262392\t3.312659\nFrance\tNotre Dame de Gravenchon\tAssociation Surr\u00e9nales\twww.surrenales.com\t+33\t2 76 98 23 12\tFull Member\tAPPROXIMATE\t49.489108\t0.567624\nFrance\tBOIS GUILLAUME\tAssociation Syndrome de Kleine-Levin\tkls-france.org\t+33\t02 35 60 49 32\tFull Member\tAPPROXIMATE\t49.468852\t1.114831\nFrance\tHATTEN\tAssociation Syndrome De Moebius France\twww.moebius-france.org\t+33\t3 89 70 15 85\tFull Member\tAPPROXIMATE\t48.902240\t7.978424\nFrance\tParis\tAssociation Syndrome de ROKITANSKY - MRKH\twww.asso-mrkh.org\t+33\t6 08 65 33 53\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tPoitiers\tAssociation Tanguy Moya Moya\twww.tanguy-moya-moya.org\t+33\t6 86 77 76 87\tFull Member\tAPPROXIMATE\t46.580224\t0.340375\nFrance\tValence\tAssociation Thera Wanka\thttp:\/\/association-thera-wanka.org\t+33\t4 75 56 91 05\tAssociate Member\tAPPROXIMATE\t44.933393\t4.892360\nFrance\t\"Foug\u00e8res cedex \"\tCharcot-Marie-Tooth France\twww.cmt-france.org\t+33\t02 47 27 96 41\tFull Member\tAPPROXIMATE\t48.351561\t-1.204626\nFrance\t Bons en Chablais\tCutis Laxa Internationale\twww.cutislaxa.org\t+33\t4 56 30 74 43\tFull Member\tAPPROXIMATE\t46.264451\t6.370310\nFrance\tParis\tDebra France\twww.debra.fr\t+33\t\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tParis\tDravet Syndrome European Federation\twww.dravet.eu\t+33\t\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tBellegarde sur Valserine   \tEnfants de la Lune Association pour le Xeroderma Pigmentosum\twww.enfantsdelalune.org\t+33\t4 57 05 13 61 \tFull Member\tAPPROXIMATE\t46.107599\t5.826179\nFrance\tParis\tEuropean Federation Lesch-Nyhan Disease\twww.LNDE.org\t+33\t\tAssociate Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tCroissy sur Seine\tEUROPEAN FEDERATION OF ASSOCIATIONS OF PATIENTS WITH HAEMOCHROMATOSIS\thttp:\/\/efaph.eu\/\t+33\t6 08 25 94 04\tFull Member\tAPPROXIMATE\t48.878426\t2.142746\nFrance\tCr\u00e9teil Cedex\tF\u00e9d\u00e9ration des Malades Dr\u00e9panocytaires et Thalass\u00e9miques SOS Globi\twww.sosglobiparis.fr\t+33\t1 64 30 93 32\tFull Member\tAPPROXIMATE\t48.790367\t2.455572\nFrance\tParis\tFederation Euro-HSP\twww.eurohsp.eu\t+33\t\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tParis\tFITIMA Europe - Fondation International Tierno et Mariam\twww.fitima.org\t+33\t 1 64 38 33 54\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tPlourin Les Morlaix \tFOP France\twww.fopfrance.fr\t+33\t 06-64-44-78-00 \tFull Member\tAPPROXIMATE\t48.534814\t-3.790486\nFrance\tSaint Benoit\tFrance Lymphangioleiomyomatose (FLAM)\twww.francelam.org\t+33\t5 49 57 00 00\tFull Member\tAPPROXIMATE\t46.549591\t0.339989\nFrance\tParis 10\tFrance Lymphome Espoir\twww.francelymphomeespoir.fr\t+33\t42 385 466\tFull Member\tAPPROXIMATE\t48.878562\t2.360369\nFrance\tLivry Gargan\tG\u00e9n\u00e9ration 22\twww.generation22.fr\t+33\t1 40 86 39 85\tFull Member\tAPPROXIMATE\t48.919230\t2.536118\nFrance\tRennes\tGenespoir: Association Fran\u00e7aise des Albinismes\thttp:\/\/www.genespoir.org\t+33\t2 99 30 96 79\tFull Member\tAPPROXIMATE\t48.117266\t-1.677793\nFrance\tMalakoff\tGENIRIS\thttp:\/\/associationgeniris.free.fr\/\t+33\t658297527\tFull Member\tAPPROXIMATE\t48.817275\t2.297760\nFrance\t Asni\u00e8res les Dijpon\tHTAP France\twww.htapfrance.com\t+33\t3 87 72 34 64\tFull Member\tAPPROXIMATE\t47.384921\t5.046628\nFrance\tHuningue\tHypophosphatasie Europe\twww.hypophosphatasie.com\t+33\t4 37 42 58 02\tFull Member\tAPPROXIMATE\t47.593723\t7.581459\nFrance\tSaint Didier au Mont d'Or\tIncontinentia Pigmenti France\thttp:\/\/incontinentia-pigmenti.fr\/\t+33\t4 78 35 96 32\tFull Member\tAPPROXIMATE\t45.811833\t4.798020\nFrance\tParis\tInflam'\u0153il\twww.inflamoeil.org\t+33\t1 74 05 74 23\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tSaint Uze\tLes Enfants du Jardin\thttp:\/\/www.lesenfantsdujardin.fr\/\t+33\t4  75 03 27 01\tFull Member\tAPPROXIMATE\t45.189454\t4.861448\nFrance\tLa Chapelle St Aurin\tLes petits bourdons\twww.lespetitsbourdons.org\t+33\t2 53 76 63 09\tAssociate Member\tAPPROXIMATE\t48.032624\t0.159039\nFrance\tMontboissier\tLigue contre la Cardiomyopathie\thttp:\/\/www.ligue-cardiomyopathie.com\/\t+33\t6 86 41 41 99\tAssociate Member\tAPPROXIMATE\t48.221304\t1.392803\nFrance\tParis\tLigue Nationale Contre Le Cancer\twww.ligue-cancer.net\t+33\t1 53 55 24 00\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tParis\tLupus France\twww.lupusfrance.com\/\t+33\t1 45 26 33 27\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tBois-Colombes\tMosa\u00efques - Association des \"X Fragile\"\twww.xfragile.org\t+33\t1 47 60 24 99\tFull Member\tAPPROXIMATE\t48.917402\t2.269675\nFrance\tMarseille\tNaevus Global\twww.naevusglobal.org\t+33\t491324937\tAssociate Member\tAPPROXIMATE\t43.296482\t5.369780\nFrance\tLens\tOuvrir Les Yeux - OLY\twww.ouvrirlesyeux.org\t+33\t03.21.05.49.56\tFull Member\tAPPROXIMATE\t50.428930\t2.831830\nFrance\tCourbouzon\tPolyposes Familiales - Aptepf\thttp:\/\/aptepf.free.fr\/\t+33\t3 84 43 08 41\tFull Member\tAPPROXIMATE\t47.713177\t1.544959\nFrance\tREIMS\tPrader Willi France\twww.prader-willi.fr\t+33\t3 26 02 02 74\tFull Member\tAPPROXIMATE\t49.258329\t4.031696\nFrance\tColomiers Cedex\tRetina France\twww.retina.fr\t+33\t5 61 30 20 50\tFull Member\tAPPROXIMATE\t43.612189\t1.336579\nFrance\tSAINT ARROUMEX\tSanfilippo Sud\thttp:\/\/sanfilipposud.org\/\t+33\t06.07.15.36.60\tFull Member\tAPPROXIMATE\t43.992472\t0.997100\nFrance\tSaint Michel dur Orge\tSolidarit\u00e9 Handicap autour des maladies rares\twww.solhand-maladiesrares.org\t+33\t674782203\tFull Member\tAPPROXIMATE\t48.632640\t2.312884\nFrance\tCompi\u00e8gne\tUnion Huntington Espoir\twww.huntington.asso.fr\t+33\t6 33 87 20 81\tFull Member\tAPPROXIMATE\t49.417816\t2.826145\nFrance\tParis cedex 18\tUnion Nationale des Associations Parents et Amis Personnes Handicap\u00e9es Mentales\twww.unapei.org\t+33\t1 44 85 50 50\tAssociate Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tFourques\tUnion Nationale des Syndromes d'Ehlers-Danlos\thttp:\/\/www.unsed.org\t+33\t0620811442\tFull Member\tAPPROXIMATE\t43.692762\t4.610861\nFrance\tParis\tVaincre la Mucoviscidose\twww.vaincrelamuco.org\t+33\t1 40 78 91 91\tFull Member\tAPPROXIMATE\t48.856614\t2.352222\nFrance\tVillebon sur Yvette\tVaincre la Papillomatose Respiratoire R\u00e9currente\twww.vaincreprr.fr\t+33\t689329574\tFull Member\tAPPROXIMATE\t48.696403\t2.236654\nFrance\tMassy\tVaincre les Maladies Lysosomales\twww.vml-asso.org\t+33\t1 69 75 40 30\tFull Member\tAPPROXIMATE\t48.730756\t2.271370\nFrance\tEragny sur Oise\tValentin - Association des porteurs d'anomalies chromosomiques\twww.valentin-apac.org\t+33\t1 30 37 90 97\tFull Member\tAPPROXIMATE\t49.024580\t2.094985\nFrance\tEGREVILLE\tVHL France\twww.vhlfrance.org\t+33\t9 53 32 73 13\tFull Member\tAPPROXIMATE\t48.175288\t2.871868\nFrance\tVilleurbanne\tX Fragile France\twww.xfra.org\t+33\t2 33 64 95 17\tFull Member\tAPPROXIMATE\t45.771944\t4.890171\nFrance\tLevallois\tXtraordinaire\twww.xtraordinaire.org\t+33\t970406140\tFull Member\tAPPROXIMATE\t48.893217\t2.287864\nGeorgia\tTbilisi\tGeorgian Foundation for Genetic and Rare Diseases\t\t+995\t 532 91 60 91\tAssociate Member\tAPPROXIMATE\t41.715138\t44.827096\nGermany\tBerlin\tACHSE Allianz Chronischer Seltener Erkrankungen e.V.\twww.achse-online.de\t+49\t30 33 00 7080\tFull Member\tAPPROXIMATE\t52.520007\t13.404954\nGermany\tBornheim\tAHC-Deutschland eV\twww.ahckids.de\t+49\t22 22 61 279\tFull Member\tAPPROXIMATE\t50.759586\t6.982141\nGermany\tBochum\tAktion Benni & Co e.V.\twww.benniundco.de\t+49\t2327 960458\tFull Member\tAPPROXIMATE\t51.481845\t7.216236\nGermany\tK\u00f6ln\tAlpha 1 Netzwerk eV\twww.alpha1-netzwerk.de\t+49\t2215007535\tFull Member\tAPPROXIMATE\t50.937531\t6.960279\nGermany\tErdweg\tBSHV f\u00fcr Kinder, Jugendliche und Erwachsene mit seltenen,chronischen Skeletterkrankungen e.V.\tbshv-seltene-skelett-erkrankungen.com\t+49\t08135\/939632\tFull Member\tAPPROXIMATE\t48.331751\t11.301964\nGermany\tWaldfeucht\tBundesverband der Clusterkopfschmerzen-Selbsthilfe-Gruppen\twww.clusterkopf.de\t+49\t2452 6878684\tFull Member\tAPPROXIMATE\t51.065988\t5.988370\nGermany\tM\u00fclheim\tBundesverband f\u00fcr Angeborene Gef\u00e4\u00dffehlbildungen e.V.\twww.angiodysplasie.de\t+49\t208-51130\tFull Member\tAPPROXIMATE\t51.418568\t6.884523\nGermany\tBremen\tBundesverband Kleinw\u00fcschsige Menschen und ihre Familien e.V.\twww.bkmf.de\t+49\t421 33 61 690\tFull Member\tAPPROXIMATE\t53.079296\t8.801694\nGermany\tThermalbad Wiesenbad\tBundesverband Poliomyelitis eV\tpolio-selbsthilfe.de\/willkommen\t+49\t3733 504 11 87\tFull Member\tAPPROXIMATE\t50.610724\t13.020102\nGermany\tEmskirchen\tCharge Syndrom eV\twww.charge-syndrom.de\t+49\t9104 826 345\tFull Member\tAPPROXIMATE\t49.550881\t10.712809\nGermany\tBonn\tCystic Fibrosis Europe\twww.cfww.org\/cfe\/\t+49\t228  98780 31\tFull Member\tAPPROXIMATE\t50.737430\t7.098207\nGermany\tRatingen\tCystinose Selbsthilfe e.V.\twww.leben-eben.com\t+49\t02102 69627\tFull Member\tAPPROXIMATE\t51.296415\t6.840184\nGermany\tRoth\tDeutsche Ehlers-Danlos Initiative e. V\twww.ehlers-danlos-initiative.de\t+49\t09171\tFull Member\tAPPROXIMATE\t49.245634\t11.091161\nGermany\tBerlin\tDeutsche GBS CIDP Initiative e.V\t\"gbs-selbsthilfe.org \"\t+49\t30-47599547\tFull Member\tAPPROXIMATE\t52.520007\t13.404954\nGermany\tF\u00fcrth\tDeutsche Interessengemeinschaft PKU\twww.dig-pku.de\t+49\t0911 9791034\tFull Member\tAPPROXIMATE\t49.477117\t10.988667\nGermany\tStolberg\tDeutsche Klinefelter-Syndrom Vereinigung e.V.\twww.klinefelter.de\t+49\t700 999 47 999\tFull Member\tROOFTOP\t50.769821\t6.230875\nGermany\tSoest\tDeutsche Narkolepsie Gesellschaft e.V.\twww.dng-ev.org\t+49\t29219437864\tFull Member\tAPPROXIMATE\t51.571148\t8.105754\nGermany\tMeerbusch\tDeutsche Sarkoidose Vereinigung Gemeinn\u00fctziger e.V.\twww.Sarkoidose.de\t+49\t215 070 59 60\tFull Member\tAPPROXIMATE\t51.250351\t6.690717\nGermany\tSchnaitsee\tDeutsche Selbsthilfe Angeborene Immundefekte e.V.\twww.dsai.de\t+49\t80 74 81 64\tFull Member\tAPPROXIMATE\t48.070379\t12.368161\nGermany\tMutterstadt\tDeutsche Syringomyelie und Chiari Malformation DSCM e.V.\twww.deutsche-syringomyelie.de\t+49\t6234-3020365\tFull Member\tAPPROXIMATE\t49.441970\t8.355270\nGermany\tStuttgart\tDeutschsprachige Selbsthilfegruppe f\u00fcr Alkaptonurie e.V.\twww.dsaku.de\t+49\t711-2268835\tFull Member\tAPPROXIMATE\t48.775846\t9.182932\nGermany\tBielefeld\tEhlers-Danlos Selbsthilfe e. V\twww.eds-selbsthilfe-ev.de\t+49\t5205 72 89 53\tFull Member\tAPPROXIMATE\t52.030228\t8.532471\nGermany\tMeerbusch\tEuropean Association of Patient Organisations of Sarcoidosis (EPOS)\twww.sarcoidosis.biz\t+49\t21 50 70 596 70\tFull Member\tAPPROXIMATE\t51.250351\t6.690717\nGermany\tAachen\tEuropean Congenital Heart Disease Organisation\thttp:\/\/echdo.eu\t+49\t241 912332\tAssociate Member\tAPPROXIMATE\t50.775346\t6.083887\nGermany\tWunstorf\tEuropean MEN Alliance\twww.Emena.eu\t+49\t05031 971652\tAssociate Member\tAPPROXIMATE\t52.420753\t9.443283\nGermany\tK\u00fcrten\tEuropean Network for Ichthyosis - eni\twww.ichthyose.eu\t+49\t2207 849869\tFull Member\tAPPROXIMATE\t51.053238\t7.263447\nGermany\tN\u00fcrnberg\tFAUN Stiftung\thttp:\/\/faun-stiftung.de\t+49\t911 358021\tAssociate Member\tAPPROXIMATE\t49.452102\t11.076665\nGermany\tKoxhausen\tGaucher Gesellschaft Deutschland e.V.\twww.ggd-ev.de\t+49\t\"0700 - 44 30 04 43 \"\tFull Member\tAPPROXIMATE\t49.995812\t6.245350\nGermany\tAschaffenburg\tGesellschaft f\u00fcr Mukopolysaccharidosen e.V.\twww.mps-ev.de\t+49\t6021-858373\tFull Member\tAPPROXIMATE\t49.980663\t9.135555\nGermany\tAldenhoven\/Siersdorf\tHAE Vereinigung e.V. (Hereditary Angioedema)\twww.angiooedem.de\t+49\t24 64  90 87 87\tFull Member\tAPPROXIMATE\t50.897377\t6.226646\nGermany\tVelbert\tHoffnungsbaum e.V.\twww.hoffnungsbaum.de\t+49\t20 51 68 075\tFull Member\tAPPROXIMATE\t51.337070\t7.042677\nGermany\tKarlsruhe\tHSP-Selbsthilfegruppe Deutschland e.V.\twww.hsp-selbsthilfegruppe.de\t+49\t721- 5164562\tFull Member\tAPPROXIMATE\t49.006890\t8.403653\nGermany\tEuskirchen\tICA-Deutschland e.V. F\u00f6rderverein Interstitielle Cystitis\twww.ica-ev.de\t+49\t2252 83763 87\tFull Member\tAPPROXIMATE\t50.657439\t6.789995\nGermany\tBiedenkopf\tInteressengemeinschaft Epidermolysis Bullosa - Debra Deutschland\twww.ieb-debra.de\t+49\t6461-9260887\tFull Member\tAPPROXIMATE\t50.912151\t8.530123\nGermany\tRostock\tInteressengemeinschaft Fragiles-X e.V.\twww.frax.de\t+49\t\"641-6304043 \"\tFull Member\tAPPROXIMATE\t54.092441\t12.099147\nGermany\tKempten\tKinder mit Deletionssyndrom 22q11 (KIDS-22Q11) eV\twww.kids-22q11.de\t+49\t8379 7288 0\tFull Member\tAPPROXIMATE\t47.728570\t10.315783\nGermany\tBonn\tKinder-Augen-Krebs-Stiftung\twww.kinderaugenkrebsstiftung.de\t+49\t228 688460\tAssociate Member\tAPPROXIMATE\t50.737430\t7.098207\nGermany\tAschaffenburg\tKindernetzwerk e.V\twww.kindernetzwerk.de\t+49\t60 21 - 1 20 30\tFull Member\tAPPROXIMATE\t49.980663\t9.135555\nGermany\tMunich\tKindness for Kids Foundation\twww.kindness-for-kids.de\t+49\t89 21 56 85 80\tAssociate Member\tAPPROXIMATE\t48.135125\t11.581980\nGermany\tMarkdorf\tLeben mit Behcet - S\u00fcddeutschland\t\t+49\t75 44 71 341\tAssociate Member\tAPPROXIMATE\t47.719384\t9.392502\nGermany\tKassel\tLeben mit Behcet In Deutschland\twww.behcet-selbsthilfe.de\t+49\t0561-875751\tAssociate Member\tAPPROXIMATE\t51.312711\t9.479746\nGermany\tWedemark\tLeona e.V.\twww.leona-ev.de\t+49\t5130 37 49 92\tFull Member\tAPPROXIMATE\t52.545781\t9.733644\nGermany\tEutin\tMarfan Europe Network\twww.marfan.eu\t+49\t45218305034\tFull Member\tAPPROXIMATE\t54.133028\t10.609505\nGermany\tNeu Ulm\tMastozytose Iniitative Selbsthilfenetzwerk\twww.mastozytose.com\t+49\t731 176 34 22\tAssociate Member\tAPPROXIMATE\t48.390604\t10.006040\nGermany\tNiederkr\u00fcchten\tMorbus-Osler Selbsthilfe eV\twww.morbus-osler.de\t+49\t2163 81 429\tFull Member\tAPPROXIMATE\t51.198831\t6.219245\nGermany\tBonn\tMPN-Netzwerk e.V.\twww.Mpn-netzwerk.de\t+49\t41358401\tFull Member\tAPPROXIMATE\t50.737430\t7.098207\nGermany\tEuskirchen\tMultinational Interstitial Cystitis Association (MICA)\twww.mica-online.org\t+49\t163 908 44 93\tAssociate Member\tAPPROXIMATE\t50.657439\t6.789995\nGermany\tBerlin\tNCL-Gruppe Deutschland e.V.\twww.ncl-deutschland.de\t+49\t030\/411 26 19\tFull Member\tAPPROXIMATE\t52.520007\t13.404954\nGermany\tWorpswede\tNephie\twww.nephie.de\t+49\t47927490\tFull Member\tAPPROXIMATE\t53.219882\t8.925474\nGermany\tF\u00fcrth\tNetzwerk Hypophysen- und Nebennierenerkrankungen e. V.\twww.glandula-online.de\t+49\t911-9792009-0\tFull Member\tAPPROXIMATE\t49.477117\t10.988667\nGermany\tBamberg\tOIFE - Osteogeneis Imperfecta Federation Europe\twww.oife.org\t+49\t951 60 3316\tFull Member\tAPPROXIMATE\t49.898814\t10.902764\nGermany\tStuttgart\tPatienten- und Selbsthilfeorganisation f\u00fcr Kinder und Erwachsene mit kranker Speiser\u00f6hre\twww.keks.org\t+49\t711 953 78 86\tFull Member\tAPPROXIMATE\t48.775846\t9.182932\nGermany\tM\u00fcnster\tPatientenverband Famili\u00e4re Amyloid Polyneuropathie\t\t+49\t0251-83-44826\tAssociate Member\tAPPROXIMATE\t51.960665\t7.626135\nGermany\tAachen\tPro Retina Deutschland e.V.\twww.pro-retina.de\t+49\t241 87 00 18\tAssociate Member\tAPPROXIMATE\t50.775346\t6.083887\nGermany\tRheinstetten\tPulmonale Hypertonie e.V.\twww.phev.de\t+49\t7242 9534 141\tFull Member\tAPPROXIMATE\t48.961811\t8.292246\nGermany\tFrankfurt am Main\tSanfilippo Initiative e.V.\twww.sanfilippoinitiative.org\t+49\t15770687853\tAssociate Member\tAPPROXIMATE\t50.110922\t8.682127\nGermany\tM\u00fchlacke\tSelbsthilfe EPP e.V\twww.epp-deutschland.de\t+49\t1803\/551851198\tFull Member\tAPPROXIMATE\t48.948938\t8.852424\nGermany\tMittenwalde OT Brusendorf\tSelbsthilfe Ichthyose e.V.\twww.ichthyose.de\t+49\t3 37 64 204 57\tFull Member\tAPPROXIMATE\t52.308479\t13.510120\nGermany\tAichtal\tSelbsthilfegruppe Ektodermale Dysplasie e.V.\twww.ektodermale-dysplasie.de\t+49\t7127 96 96 91\tFull Member\tAPPROXIMATE\t48.629005\t9.260570\nGermany\tFreudenberg\tSelbsthilfegruppe f\u00fcr PXE - Erkrankte Deutschlands e.V.\twww.pxe-groenblad.de\t+49\t2734 49579 11\tFull Member\tAPPROXIMATE\t50.904109\t7.878078\nGermany\tMarl\tSelbsthilfegruppe Glykogenose Deutschland e.V.\twww.glykogenose.de\t+49\t2365 931 406\tFull Member\tAPPROXIMATE\t51.659123\t7.106022\nGermany\tM\u00fcnchen\tSelbsthilfeorganisation f\u00fcr Menschen mit Anorektalfehlbildungen\twww.soma-ev.de\t+49\t89 14 90 42 62\tFull Member\tAPPROXIMATE\t48.135125\t11.581980\nGermany\tHeilbronn\tSklerodermie Selbsthilfe e.V.\twww.sklerodermie-sh.de\t+49\t71\u00a031 390 24 25\tFull Member\tAPPROXIMATE\t49.142693\t9.210879\nGermany\tFreiburg im Breisgau\tSMA Europe\twww.sma-europe.eu\t+49\t7665 9447 0\tFull Member\tAPPROXIMATE\t47.999008\t7.842104\nGermany\tVeitsh\u00f6chheim\tSos-desmoid e.V.\twww.sos-desmoid.de\t+49\t931 9911140\tFull Member\tAPPROXIMATE\t49.831270\t9.880367\nGermany\tCologne\tSSADH-Defizit e.V\tssadh.wordpress.com\t+49\t17685350918\tAssociate Member\tAPPROXIMATE\t50.937531\t6.960279\nGermany\tKreuzau-Stockheim\tStiff-Person Vereinigung Deutschland e.V.\twww.stiff-person.de\t+49\t2421 504357\tFull Member\tAPPROXIMATE\t50.758461\t6.522845\nGermany\tStuttgart\tThe Federation of Esophageal Atresia and Tracheo-Esophageal Fistula Support Groups e.V.\twww.we-are-eat.org\t+49\t 11\/9 53 78 86\tFull Member\tAPPROXIMATE\t48.775846\t9.182932\nGermany\tM\u00fcnster\tTom Wahlig Stiftung\twww.hsp-info.de\t+49\t251 200 79 120\tFull Member\tAPPROXIMATE\t51.960665\t7.626135\nGermany\tBischofsheim\tVerein AHC18+\thttps:\/\/www.facebook.com\/pages\/Association-ahc18\/606879759444135\t+49\t175 75 20\tAssociate Member\tAPPROXIMATE\t49.987087\t8.356219\nGermany\tMeppen\tVerein VHL (von Hippel - Lindau) betroffener Familien e.V.\twww.hippel-lindau.de\t+49\t5931 929552\tFull Member\tAPPROXIMATE\t52.695348\t7.299401\nGermany\tSteinfurt\tXP \u2013 Freu(n)de Mondscheinkinder\twww.xerodermapigmentosum.de\t+49\t2552\/6399593\tFull Member\tAPPROXIMATE\t52.144566\t7.333464\nGermany\tStuttgart\tZNM - Zusammen Stark! e. V.\twww.znm-zusammenstark.org\t+49\t176 22646025\tAssociate Member\tAPPROXIMATE\t48.775846\t9.182932\nGreece\tAthens\t\"To Mellon\" Asociation of people with genetic disorders\twww.tomellon.com.gr\t+30\t210 746 74 59\tFull Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tAssociation of Greek Friends for Paediatric Immunology Primary Immunodeficiencies \"Harmony\"\twww.paed-anosia.gr\t+30\t\tAssociate Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tChild's Heart\twww.kardiapaidiou.gr\t+30\t2103218488\tFull Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tGreek Alliance for Rare Disease\twww.pespa.gr\t+30\t210 76 60 989\tFull Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tHellenic Cystic Fibrosis Association\twww.cysticfibrosis.gr\t+30\t6978026718\tFull Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tHellenic League against Rheumatism\twww.arthritis.org.gr\t+30\t210 8847 268\tAssociate Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tHellenic Myasthenia Gravis Association\twww.myasthenia.gr\t+30\t211 800 2680\tFull Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tPanhellenic Association of patients & friends with Neurofibromatosis \"Life with NF\"\t\t+30\t\tAssociate Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tPalini\tPanhellinik Association of Patients with Lysosomal disorders\t\t+30\t210 6611 270\tFull Member\tAPPROXIMATE\t38.013227\t23.870371\nGreece\tAthens\tParents and Friends of People with Rett Synrome Association\twww.rettgreece.gr  \t+30\t213 014 6293\tAssociate Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tPrader Willi Syndrome Association Hellas\twww.pwshellas.gr\t+30\t210 97 654 16\tFull Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tTHESSALONIKI\tSociety of Patients and Friends of Patients with inherited metabolic disease\twww.krikoszois.gr\t+30\t2310 341 274\tFull Member\tAPPROXIMATE\t40.640063\t22.944419\nGreece\tAthens\tTuberous Sclerosis Association of Greece\twww.pespa.gr\t+30\t210 76 60 989\tFull Member\tAPPROXIMATE\t37.983810\t23.727539\nGreece\tAthens\tVHLFA Alliance in Greece\twww.vhl.org\t+30\t6944969603\tAssociate Member\tAPPROXIMATE\t37.983810\t23.727539\nGuatemala\tGuatemala\tAsociaci\u00f3n Nacional Guatemalteca para las enfermedades de dep\u00f3sito lisosomal\thttp:\/\/angel-lisosomal.org\/\t+502\t502 23670913\tAssociate Member\tAPPROXIMATE\t14.634915\t-90.506882\nGuatemala\tLA REFORMITA\tProcrece\t\t+502\t 2474 4634 \tAssociate Member\tAPPROXIMATE\t14.601319\t-90.543509\nHong Kong, SAR of China\t\tJoshua Hellmann Foundation for Orphan Disease\twww.jhforphandisease.org\/\t+852\t2297-2484\tAssociate Member\tROOFTOP\t22.279273\t114.161568\nHungary\tBudapest\t(Hungarian Haemophilia Society) Magyar Hemof\u00edlia Egyes\u00fclet\twww.mhe.hu \t+36\t1-422-1755\tFull Member\tAPPROXIMATE\t47.497912\t19.040235\nHungary\tBudapest\tMagya\u00f3rsz\u00e1gi Mitochondri\u00e1lis Betegek Alap\u00edtv\u00e1nya\twww.nbia.hu \t+36\t30 6558638\tFull Member\tAPPROXIMATE\t47.497912\t19.040235\nHungary\tErd\tPrimer Immunhianyos Betegek Egyes\u00fclete\twww.pibe.hu\t+36\t70 2890721\tFull Member\tAPPROXIMATE\t47.391972\t18.904544\nHungary\tBudapest\tRare Diseases Hungary -  RIROSZ\twww.rirosz.hu\t+36\t1 788 38 81\tFull Member\tAPPROXIMATE\t47.497912\t19.040235\nIceland\tGardabaer\tAHC Federation of Europe\twww.ahcfe.eu\t+354\t8989097\tAssociate Member\tAPPROXIMATE\t64.078804\t-21.890909\nIceland\tGardabaer\tAlternating Hemiplegia of Childhood association of Iceland\twww.ahc.is\t+354\t4 567 00 35\tFull Member\tAPPROXIMATE\t64.078804\t-21.890909\nIceland\tReykjavik\tEinst\u00f6k B\u00f6rn - Support Group for Children with Rare Disorders\twww.einstokborn.is\/\t+354\t354 699 26 61\tFull Member\tAPPROXIMATE\t64.126521\t-21.817439\nIceland\tKopavogur\tGudrun's Rett Syndrome Research Trust\trettenglar.yolasite.com\t+354\t5526769\tAssociate Member\tAPPROXIMATE\t64.103302\t-21.883258\nIceland\tReykjavik\tHypoparathyroidism Europe (HPTH Europe)\t\t+354\t4564 02 38\tAssociate Member\tAPPROXIMATE\t64.126521\t-21.817439\nIceland\tKopavogur\tThe Icelandic Childhood Cancer Parent Organization\twww.skb.is\t+354\t588 75 55 \tFull Member\tAPPROXIMATE\t64.103302\t-21.883258\nIndia\tBombay\tIndian Organization for Rare Diseases\twww.I-ORD.org\t+91\t6516887382\tAssociate Member\tAPPROXIMATE\t19.075984\t72.877656\nIndia\tBangalore\tOrganization for Rare Diseases India\twww.ordindia.org\t+91\t8892 555 000\tAssociate Member\tAPPROXIMATE\t12.971599\t77.594563\nIran\tTeheran\tCharity Foundation for Special Diseases\twww.cffsd.org\t98\t21 887 13 137\tAssociate Member\tAPPROXIMATE\t35.689197\t51.388974\nIran\tTehran\tRare Disease Foundation of Iran\thttp:\/\/radoir.com\t+98\t\"2166591859-69 \"\tAssociate Member\tAPPROXIMATE\t35.689197\t51.388974\nIreland\tDublin 9\tAlpha One Foundation\twww.alpha1.ie\t+353\t1 45 24 341\tFull Member\tAPPROXIMATE\t53.381610\t-6.246522\nIreland\tDublin\tAtaxia Ireland\thttp:\/\/ataxia.ie\/\t+353\t1 289 47 88\tFull Member\tAPPROXIMATE\t53.349805\t-6.260310\nIreland\t\tBarretstown Serious Fun\twww.barretstown.org\t+353\t45864115\tAssociate Member\tAPPROXIMATE\t53.412910\t-8.243890\nIreland\tDublin\tCystinosis Ireland\tcystinosis.ie\t+353\t1 828 0483\tFull Member\tAPPROXIMATE\t53.349805\t-6.260310\nIreland\tDublin 2\tFighting Blindness\twww.fightingblindness.ie\t+353\t1 678 9004\tFull Member\tAPPROXIMATE\t53.339894\t-6.254273\nIreland\tDublin 16\tFriedreich's Ataxia Research Alliance\twww.faraireland.ie\t+353\t045 401218\tFull Member\tAPPROXIMATE\t53.279860\t-6.278982\nIreland\tDublin 7\tHuntington's Disease Association of Ireland\twww.huntingtons.ie\t+353\t\"3 1 87 21 303  \"\tFull Member\tAPPROXIMATE\t53.361372\t-6.291738\nIreland\tDublin\tIrish Cancer Society\twww.cancer.ie\t+353\t1 231 0500\tAssociate Member\tAPPROXIMATE\t53.349805\t-6.260310\nIreland\tDublin 20\tMuscular Dystrophy Ireland\twww.mdi.ie\t+353\t1-6236414\tFull Member\tAPPROXIMATE\t53.351597\t-6.369375\nIreland\tDublin\tNeurofibromatosis Association of  Ireland\twww.nfaireland.ie\t+353\t1 872 63 38\tFull Member\tAPPROXIMATE\t53.349805\t-6.260310\nIreland\tTULLAMORE, Co. Offaly, R35 TP68\tPoPSyCLE Foundation\twww.popsycle.eu\t+353\t57 9353552\tAssociate Member\tAPPROXIMATE\t53.305983\t-7.212700\nIreland\tDublin 2\tRare Diseases Ireland\twww.grdo.ie\t+353\t 1 678 9004\tFull Member\tAPPROXIMATE\t53.339894\t-6.254273\nIreland\tDublin 1\tSickle Cell and Thalassaemie Ireland\twww.sicklecellireland.ie\t+353\t870 656 807\tFull Member\tAPPROXIMATE\t53.353784\t-6.254527\nIreland\tCounty Monaghan, Castleblaney\tSyringomyelia Ireland\twww.syringomyelia.ie\t+353\t42 97 421 02\tFull Member\tAPPROXIMATE\t54.120659\t-6.739737\nIreland\tBelfast\tThe Cavan Tommy Hoey Trust\thttp:\/\/www.the-cavan-tommy-hoey-trust.org.uk\/page1.php\t+353\t2890654471\tAssociate Member\tAPPROXIMATE\t54.597285\t-5.930120\nIreland\tDublin 2\tThe Irish Fragile X Society\thttp:\/\/fragilexireland.org\t+353\t1 651 9689 \tFull Member\tAPPROXIMATE\t53.339894\t-6.254273\nIsrael\tJerusalem\tIsrael Adult Polyglucosan Body Disease\t\t+972\t54.276.4510\tAssociate Member\tAPPROXIMATE\t31.768319\t35.213710\nItaly\tSan Casciano in VP\tABC Associazione Bambini Cri du Chat\twww.criduchat.it\t+39\t055 82 86 83\tFull Member\tAPPROXIMATE\t43.652172\t11.182611\nItaly\tAprilia (LT)\tAcondroplasia - Insieme per crescere - Onlus\twww.acondroplasia-insiemepercrescere.it\t+39\t069253263\tFull Member\tAPPROXIMATE\t41.594402\t12.656031\nItaly\tVergiate\tAIBWS Onlus\twww.aibws.org\t+39\t3456121850\tFull Member\tAPPROXIMATE\t45.721729\t8.694245\nItaly\tSan Giovanni rotondo (Foggia)\tAmici della Porfiria - San Pio da Pietrelcina Onlus\twww.porfiria.it\t+39\t0882 410293 477\tAssociate Member\tAPPROXIMATE\t41.706590\t15.729179\nItaly\tRoma\tAngeli Noonan\twww.angelinoonan.it\t+39\t338 781 6915 \tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\tLecce\tAssocciazione Persone con Malattie Reumatiche \u2013 APMAR Onlus\twww.apmar.it\t+39\t0832 520 165\tFull Member\tAPPROXIMATE\t40.351515\t18.175016\nItaly\tRoma\tAssociazione Conto Alla Rovescia\twww.acar2006.org\t+39\t3473529618\tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\tBrescia\tAssociazione Del Bambino Emopatico\twww.associazionebambinoemopatico.it\t+39\t0303702556\tFull Member\tAPPROXIMATE\t45.541553\t10.211802\nItaly\tVicenza\tAssociazione Famiglie di Soggetti con Deficit Dell'ormone della Crescita ed altre Patologie\twww.afadoc.it\t+39\t0444 301570\tFull Member\tAPPROXIMATE\t45.545479\t11.535421\nItaly\tRoma\tAssociazione Italiana Cistite Interstiziale\twww.aici-onlus.it\t+39\t06 58 33 33 84\tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\tSan Donato Milanese\tAssociazione Italiana dei Cardiopatici Congeniti Adulti - Italian GUCH Association\twww.aicca.eu\t+39\t0252774912\tAssociate Member\tAPPROXIMATE\t45.409240\t9.268487\nItaly\tS. Colombano - Capannori (Lucca)\tAssociazione Italiana Estrofia Vescicale-Epispadia Onlus\twww.estrofiavescicale.it\t+39\t0583 929182\tFull Member\tGEOMETRIC_CENTER\t43.783625\t10.561411\nItaly\tReggello (Florence)\tAssociazione Italiana Gaucher Onlus - AIG\twww.gaucheritalia.org\t+39\t335 25 66 28\tFull Member\tAPPROXIMATE\t43.683109\t11.532750\nItaly\tAssago (Milano)\tAssociazione Italiana Glicogenosi\twww.aig-aig.it\t+39\t245 703 334\tFull Member\tAPPROXIMATE\t45.406199\t9.123969\nItaly\tFormia LT\tAssociazione Italiana Leucodistrofie Unite (AILU)\thttp:\/\/digilander.libero.it\/ailu\/\t+39\t0771-24939\tFull Member\tAPPROXIMATE\t41.255996\t13.606867\nItaly\tSan Giorgio a Cremano (NA)\tAssociazione Italiana Linfoistiocitosi Emofagocitica\twww.aileonlus.org\t+39\t\tAssociate Member\tAPPROXIMATE\t40.834483\t14.344744\nItaly\tSiena (SI)\tAssociazione Italiana Malati di Alcaptonuria\twww.aimaku.it\t+39\t\tFull Member\tAPPROXIMATE\t43.318809\t11.330757\nItaly\tBusto Arsizio Varese\tAssociazione Italiana malformazione di Arnold-Chiari Child\twww.arnold-chiari.it\t+39\t331 19 662 18\tFull Member\tAPPROXIMATE\t45.611892\t8.853127\nItaly\tMilano MI\tAssociazione Italiana Miastenia e Malattie Immunodegenerative - Amici del Besta onlus\twww.miastenia.it\t+39\t022360280\tFull Member\tAPPROXIMATE\t45.464204\t9.189982\nItaly\tPisa\tAssociazione Italiana Miastenia Onlus\twww.viverelamiastenia.it\t+39\t50 25217\tFull Member\tAPPROXIMATE\t43.722839\t10.401689\nItaly\tSenago MI\tAssociazione Italiana Mucopolisaccaridosi e Malattie Affini\twww.aimps.it\t+39\t02 990 101 88\tFull Member\tAPPROXIMATE\t45.576363\t9.126126\nItaly\tLanzo Torinese\tAssociazione Italiana Niemann Pick e Malattie Affini - Onlus\twww.niemannpick.org\t+39\t0123 28 995\tFull Member\tAPPROXIMATE\t45.270102\t7.477465\nItaly\tMilano\tAssociazione Italiana per la lotta alle PHTS\twww.ptenitalia.org\t+39\t3805997348\tFull Member\tAPPROXIMATE\t45.465422\t9.185924\nItaly\tRoma\tAssociazione Italiana per le Malformazioni Anorettali\twww.aimar.eu\t+39\t049\/8213681\tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\t Milano (Lombardia)\tAssociazione Italiana Sclerosi Laterale Amiotrofica (Sez. 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Pigmenti Associazione Italiana Onlus\twww.incontinentiapigmenti.it\t+39\t0774570624\tAssociate Member\tAPPROXIMATE\t41.993969\t12.724504\nItaly\tMilano\tLega Italiana Sclerosi Sistemica Onlus\twww.sclerosistemica.info\t+39\t028966586\tFull Member\tAPPROXIMATE\t45.465422\t9.185924\nItaly\tGenova\tLND Famiglie Italiane Onlus\twww.lnd-it.com\t+39\t3387953875\tFull Member\tAPPROXIMATE\t44.405650\t8.946256\nItaly\tTencarola di Selvazzano PD\tp63 EEC Syndrome International net work word communication - MALATTIE RARE ONLUS\twww.sindrome-eec.it\t+39\t333 30633563\tAssociate Member\tAPPROXIMATE\t45.391020\t11.808525\nItaly\tFirenze\tPandas Italia\twww.pandasitalia.com\t+39\t377 993 6632\tFull Member\tAPPROXIMATE\t43.769560\t11.255814\nItaly\tRoma\tParent Project Onlus\twww.parentproject.it\t+39\t06 66 18 28 11\tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\tMonterenzio (BO)\tPKS Kids Italia Onlus\twww.pksitalia.org\t+39\t347 4864408\tFull Member\tAPPROXIMATE\t44.328056\t11.405057\nItaly\tMILANO\tRetina Italia onlus\thttp:\/\/www.retinaitalia.org\/\t+39\t3358360470\tFull Member\tAPPROXIMATE\t45.464204\t9.189982\nItaly\tReggio Emilio\tRing 14 International\twww.ring14.org\t+39\t\tFull Member\tAPPROXIMATE\t44.698993\t10.629686\nItaly\tRoma\tSOD Italia - Associazione Italiana Displasia Setto Ottica e Ipoplasia del Nervo Ottico\twww.soditalia.it\t+39\t0 686322834\tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\tRome\tUNIAMO - Rare Diseases Italy\twww.uniamo.org\t+39\t06 4404773\tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\tRoma\tUnione Italiana Ittiosi\thttp:\/\/www.ittiosi.it\t+39\t335 789 78 21\tFull Member\tAPPROXIMATE\t41.902783\t12.496366\nItaly\tFerrara\tUnited Onlus\twww.unitedonlus.org\t+39\t3711892290\tFull Member\tAPPROXIMATE\t44.838124\t11.619787\nItaly\tLivorno\tVisus - Associazione tra affetti aa Retinite Pigmentosa\t\t+39\t330 619 811\tFull 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Patientenvereniging\twww.itp-pv.nl\t+31\t33 4701158\tFull Member\tAPPROXIMATE\t52.156111\t5.387827\nNetherlands\tHilversum\tKAISZ children with a autoinmuum or autoinflammatory disease\twww.kaisz.nl\t+31\t\tFull Member\tAPPROXIMATE\t52.229170\t5.166897\nNetherlands\tThe Hague\tMSS (Marshall-Smith Syndrome) Research Foundation\twww.marshallsmith.org\t+31\t70 33 56 956\tFull Member\tAPPROXIMATE\t52.070498\t4.300700\nNetherlands\tNijkerk\tNederlands Netwerk voor Lymfoedeem en Lipoedeem\twww.lymfoedeem.nl\t+31\t33-2471041\tAssociate Member\tAPPROXIMATE\t52.222484\t5.483563\nNetherlands\tNijkerk\tNederlandse Hypofyse Stichting (Dutch Pituitary Foundation)\twww.hypofyse.nl\t+31\t033-2471468\tFull Member\tAPPROXIMATE\t52.222484\t5.483563\nNetherlands\tBunnik\tNederlandse Phenylketonurie Vereniging \/ Dutch PKU Association\tWww.pkuvereniging.nl\t+31\t6 52011696\tFull Member\tAPPROXIMATE\t52.066528\t5.200776\nNetherlands\tBodegraven\tNephcEurope\thttp:\/\/nephceurope.eu\/nc\/\t+31\t172 617 635\tAssociate Member\tAPPROXIMATE\t52.082326\t4.746084\nNetherlands\tBloemendaal\tNetherlands Association of Patients with Sterno Costo Clavicular Hyperostosis\twww.scch.nl\t+31\t23 636 27 82\tFull Member\tAPPROXIMATE\t52.404947\t4.620185\nNetherlands\tAmersfoort\tNetherlands Liver Patients Association\twww.leverpatientenvereniging.nl\t+31\t33 46 12 231\tFull Member\tAPPROXIMATE\t52.156111\t5.387827\nNetherlands\tDen Haag\tNeurofibromatose Vereniging Nederland\twww.neurofibromatose.nl\t+31\t\tFull Member\tAPPROXIMATE\t52.070498\t4.300700\nNetherlands\tAmsterdam\tOSCAR Nederland\twww.oscarnederland.nl\t+31\t20 679 7887\tFull Member\tAPPROXIMATE\t52.370216\t4.895168\nNetherlands\tBennebroek\tPSC Patients Europe\thttp:\/\/pscpatientseurope.org\t+31\t\tFull Member\tAPPROXIMATE\t52.321001\t4.599737\nNetherlands\tNijkerk\tSarcoidose Belangenvereniging Nederland\twww.sarcoidose.nl\t+31\t332471467\tFull Member\tAPPROXIMATE\t52.222484\t5.483563\nNetherlands\tMedenblik\tStichting AA & PNH contactgroep\thttp:\/\/www.aaenpnh.nl\t+31\t085-2100651\tFull Member\tAPPROXIMATE\t52.767447\t5.106918\nNetherlands\tNijekr\tStichting Amyloidose Nederland SAN\tamyloidose.nl\t+31\t0793423722\tFull Member\tGEOMETRIC_CENTER\t52.121647\t5.108884\nNetherlands\tAW BAARN\tStichting Histiocytose Nederland\twww.histio.nl\t+31\t\tFull Member\tAPPROXIMATE\t52.217579\t5.268544\nNetherlands\tBeek en Donk\tStichting Ijzersterk\twww.stichtingijzersterk.nl\t+31\t316-47779021\tAssociate Member\tAPPROXIMATE\t51.539492\t5.630269\nNetherlands\tHoofddorp\tStichting NET-groep\twww.net-kanker.nl\t+31\t06 83590027 \tFull Member\tAPPROXIMATE\t52.306085\t4.690704\nNetherlands\t\tStichting Shwachman Diamond Syndrome Support Holland\twww.shwachman.nl\t+31\t182 61 2018\tFull Member\tAPPROXIMATE\t52.132633\t5.291266\nNetherlands\tHaarlem\tStichting Stofwisselkracht\twww.stofwisselkracht.nl\t+31\t638502400\tFull Member\tAPPROXIMATE\t52.387388\t4.646219\nNetherlands\t Leidschendam\tStichting Terre - Rett Syndrome Foundation\twww.stichtingterre.nl\t+31\t6 5396 1864\tFull Member\tAPPROXIMATE\t52.079818\t4.399612\nNetherlands\tRaamsdonksveer\tSTICHTING VOOR AFWEERSTOORNISSEN\twww.stichtingvoorafweerstoornissen.nl\t+31\t162 51 72 10\tFull Member\tAPPROXIMATE\t51.697344\t4.874229\nNetherlands\tVeenendaal\tUnited Parent Projects Muscular Dystrophy\twww.uppmd.org\t+31\t20 62 750 62\tFull Member\tAPPROXIMATE\t52.026301\t5.554431\nNetherlands\tSilvolde\tVasculitis Stichting (formerly known as Friedrich Wegener Stichting)\twww.vasculitis.nl\t+31\t072 509 09 09\tFull Member\tAPPROXIMATE\t51.909490\t6.384903\nNetherlands\tBaarn\tVereniging Spierziekten Nederland - Dutch Association For Neuromuscular Disease\twww.vsn.nl\t+31\t35 548 04 80\tFull Member\tAPPROXIMATE\t52.213182\t5.286410\nNetherlands\tZwolle\tVolwassenen, Kinderen en Stofwisselingsziekten\twww.stofwisselingsziekten.nl\t+31\t38 42 01 764\tFull Member\tAPPROXIMATE\t52.516775\t6.083022\nNetherlands\tSoest\tVSOP - Vereniging Samenwerkende Ouder En Pati\u00ebntenorganisaties\twww.vsop.nl\t+31\t35 603 40 40\tFull Member\tAPPROXIMATE\t52.176352\t5.299197\nNetherlands\t\tWorld Alliance of Pituitary Organizations\twww.wapo.org\t+31\t\tAssociate Member\tAPPROXIMATE\t52.132633\t5.291266\nNew Zealand\tWellington Mail Centre\tNew Zealand Organisation for Rare Disorders\twww.nzord.org.nz\/\t+64\t4 566 7707\tAssociate Member\tAPPROXIMATE\t-41.224623\t174.866593\nNorway\tOslo\tAniridi Norge\twww.aniridi.no\t+47\t32 81 78 36\tFull Member\tAPPROXIMATE\t59.913869\t10.752245\nNorway\tSanderfjord\tAniridia Europe\twww.aniridia.eu\t+47\t\tFull Member\tAPPROXIMATE\t59.131310\t10.216595\nNorway\tSiggerud\tFRAMBU -  Resource Centre for Rare Disorders\twww.frambu.no\t+47\t64 85 60 00\tFull Member\tAPPROXIMATE\t59.791224\t10.881873\nNorway\tSandnes\tMorbus Addison Association Norway\twww.addison.no\t+47\t8800005015\tFull Member\tAPPROXIMATE\t58.853259\t5.732946\nNorway\tHvittingfoss\tMPS foreningen Norge\t\t+47\t90886375\tAssociate Member\tAPPROXIMATE\t59.485705\t10.011750\nNorway\tVettre\tNordic hypoPARA Organisation\twww.hypopara-nordic.org\t+47\t669 00 656\tFull Member\tAPPROXIMATE\t59.830522\t10.484816\nNorway\tOslo\tNorsk forening for Arvelig Spastisk Paraparese \/ Ataksi\twww.naspa.no\t+47\t24102400\tFull Member\tAPPROXIMATE\t59.913869\t10.752245\nNorway\tDeknepollen  \tNORSK FORENING FOR EHLERS-DANLOS SYNDROM\twww.eds-foreningen.no\t+47\t911 69 359\tFull Member\tAPPROXIMATE\t61.926939\t5.144690\nNorway\tMoss\tNorsk Forening for Osteogenesis Imperfecta\twww.nfoi.no\t+47\t90643867\tFull Member\tAPPROXIMATE\t59.464228\t10.659374\nNorway\tAustvatn\tNorsk Forening for Tuberos Sklerose\twww.nfts.no\t+47\t456 72 751 \tFull Member\tAPPROXIMATE\t60.378268\t11.692823\nNorway\tTonsberg\tOslerforeningen Norge\t\"www.osler.no \"\t+47\t97535764\tFull Member\tAPPROXIMATE\t59.308557\t10.427203\nPoland\tPiekary Slakie\tDebra Polska\twww.debra-kd.pl\t+48\t381 5317\tFull Member\tAPPROXIMATE\t50.378911\t18.927048\nPoland\tZabrze\tFundacja Sanfilippo\twww: sanfilippo.org.pl\t+48\t509213336\tAssociate Member\tAPPROXIMATE\t50.324928\t18.785719\nPoland\tWarzsawa\tFundacja SMA (SMA Foundation Poland)\twww.fsma.pl\t+48\t223500202\tFull Member\tAPPROXIMATE\t52.229676\t21.012229\nPoland\tWarsaw\tFundacja Umiec Pomagac (Foundation for RD MPS )\twww.umiecpomagac.org\t+48\t601 453 733\tFull Member\tAPPROXIMATE\t52.229676\t21.012229\nPoland\tKrakow\tMATIO-Fundacji Pomocy Rodzinom i Chorym na Mukowiscydoz\u0119\twww.mukowiscydoza.pl\t+48\t292 31 80\tFull Member\tAPPROXIMATE\t50.064650\t19.944980\nPoland\tWarsaw\tPolish National Forum on the Treatment of Orphan Diseases - ORPHAN\twww.rzadkiechoroby.pl\t+48\t22 617 54 81\tFull Member\tAPPROXIMATE\t52.229676\t21.012229\nPoland\tWarsaw-Raszyn\tPolish PKU and RD Association \"Ars Vivendi\"\twww.fenyloketonuria.org\t+48\t22 720 20 66\tFull Member\tAPPROXIMATE\t52.153762\t20.920085\nPoland\tGloskow\tPolish Society of MPS and Related Diseases\t\"www.mps-society.pl \"\t+48\t715-33-19\tFull Member\tAPPROXIMATE\t52.036749\t20.943765\nPoland\tWarszawa\tPolskie Stowarzyszenie na Rzecz Os\u00f3b z AHC\t\t+48\t\tAssociate Member\tAPPROXIMATE\t52.229676\t21.012229\nPoland\tWarsaw\tThe Dina Radziwillowa Child's Heart Foundation\twww.sercedziecka.org.pl \t+48\t605882082\tFull Member\tAPPROXIMATE\t52.229676\t21.012229\nPortugal\tLisboa\tAlian\u00e7a Portuguesa de Associa\u00e7iones das Doen\u00e7as Raras\thttp:\/\/aliancadoencasraras.org\/\t+351\t968 581 556\tAssociate Member\tAPPROXIMATE\t38.722252\t-9.139337\nPortugal\tPorto\tAPLL - Associa\u00e7ao Portuguesa de Leucemias e Linfomas\twww.apll.org\t+351\t91 43 49 313\tFull Member\tAPPROXIMATE\t41.157944\t-8.629105\nPortugal\t\u00c9vora\tAssocia\u00e7\u00e3o Nacional de Displasias \u00d3sseas\twww.andoportugal.org\t+351\t913811227\tAssociate Member\tAPPROXIMATE\t38.571431\t-7.913502\nPortugal\tVale Bem\tAssociacao Portuguesa CDG e outras Doencas Metabolicas\twww.apcdg.com\t+351\t91 424 0544\tAssociate Member\tGEOMETRIC_CENTER\t38.600538\t-9.181310\nPortugal\tS\u00e3o Domingos de Rana\tAssocia\u00e7\u00e3o Portuguesa de Charcot-Marie-Tooth\tapcmt.org.pt\t+351\t926074415\tFull Member\tAPPROXIMATE\t38.712388\t-9.338968\nPortugal\tPorto\tASSOCIA\u00c7AO PORTUGUESA DE DOENTES NEUROMUSCULARES\twww.apn.pt\t+351\t122  610 62 02\tFull Member\tAPPROXIMATE\t41.157944\t-8.629105\nPortugal\tSacavem\tAssocia\u00e7\u00e3o Portuguesa de Osteog\u00e9nese Imperfeita\twww.apoi.pt\t+351\t93 8260877\tFull Member\tAPPROXIMATE\t38.791399\t-9.104116\nPortugal\tCharneca Caparica\tAssocia\u00e7\u00e3o Sanfilippo Portugal\twww.sanfilippoportugal.com\t+351\t962375357\tAssociate Member\tAPPROXIMATE\t38.627956\t-9.197318\nPortugal\t\"Ajuda \u2013 Lisboa \"\tFEDRA - Federa\u00e7ao Portuguesa de Doen\u00e7as Raras (suspended)\twww.fedra.pt\t+351\t217786100\tAssociate Member\tAPPROXIMATE\t38.711312\t-9.198212\nPortugal\tAjuda \u2013 Lisboa\tRarissimas - Associacao Nacional de Deficiencias Mentais e Raras (suspended)\twww.rarissimas.pt\t+351\t217 95 62 05\tFull Member\tAPPROXIMATE\t38.711312\t-9.198212\nRomania\tIasi\tAsociatia Copilul Meu-Inima Mea\twww.acmim.ro\t+40\t723 343911\tFull Member\tAPPROXIMATE\t47.158455\t27.601442\nRomania\tBucuresti\tAsociatia Persoanelor Cu Talasemie Majora\twww.talasemia.ro\t+40\t766 27 0026\tFull Member\tAPPROXIMATE\t44.426767\t26.102538\nRomania\tZalau\tAsocia\u021bia Rom\u00e2n\u0103 de Cancere Rar\twww.arcrareromania.ro\t+40\t\tAssociate Member\tAPPROXIMATE\t47.185456\t23.057332\nRomania\tBukarest\tAsociatia Romana Spina Bifida si Hidrocefalie\twww.arsbh.ro\t+40\t\tAssociate Member\tAPPROXIMATE\t44.426767\t26.102538\nRomania\tCarei\tAsociatia Werdnig Hoffman AWH\twww.werdnighoffman.ro\t+40\t744 666715\tFull Member\tAPPROXIMATE\t47.681451\t22.462143\nRomania\tRO-Bucharest\tAsociatia Williams Syndrome\twww.williams-syndrome.ro\t+40\t70 85\tFull Member\tAPPROXIMATE\t44.426767\t26.102538\nRomania\tBucharest\tAutoimmune Diseases Patients Association\twww.apaa.ro\t+40\t314 315 218\tAssociate Member\tAPPROXIMATE\t44.426767\t26.102538\nRomania\tBucharest\tMastocytosis Support Association Romania\twww.mastocitoza.ro\t+40\t724364344\tAssociate Member\tAPPROXIMATE\t44.426767\t26.102538\nRomania\tBucharest\tRomanian Myasthenia Gravis Association\twww.miastenie.ro\t+40\t40744704399\tFull Member\tAPPROXIMATE\t44.426767\t26.102538\nRomania\tZalau\tRomanian National Alliance for Rare Diseases\tbolirareromania.ro\t+40\t360 103 200\tFull Member\tAPPROXIMATE\t47.185456\t23.057332\nRomania\tZalau\tRomanian Prader Willi Association\twww.apwromania.ro\t+40\t260 616585\tFull Member\tAPPROXIMATE\t47.185456\t23.057332\nRussian Federation\tMoscow\tFabry Russia\twww.fabryrufa.ru\t+7\t903 7267440\tAssociate Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tMoscow\tHelp to Cystic Fibrosis Patients\twww.cfhelp.ru\t+7\t495 706 91 61\tFull Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tMoscow\tInterregional public organisation for Gaucher disease\twww.gaucher.ru\t+7\t495 321-70-17\tFull Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tUfa\tInterregional Public Organisation of patients with Fabry Disease \"The Road to Life\"\twww.fabryufa.ru\t+7\t7927-965-4043\tFull Member\tAPPROXIMATE\t54.738762\t55.972055\nRussian Federation\tMoscow\tMPS Russia\twww.mps-russia.org\t+7\t495 711 95 81\tFull Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tSt.-Petersburg\tNational Association of  Patients with Rare Diseases '\"GENETICA\"\twww.nacgenetic.ru\t+7\t812 319 3 423\tAssociate Member\tAPPROXIMATE\t59.934280\t30.335099\nRussian Federation\tMoscow\tNGO \"Fragile children\"\twww.osteogenez.ru\t+7\t903 590 04 00\tFull Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tMoscow\tRussian association of rare diseases\twww.rare-diseases.ru\t+7\t495 706-91-61\tFull Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tCheboksary\tRussian Interregional public organization \"Inter-regional support centre for patients with Aniridia \" Iris\"\twww.aniridia.ru\t+7\t961 3430035\tAssociate Member\tAPPROXIMATE\t56.116766\t47.262782\nRussian Federation\tMoscow\tRussian Patient Union\thttp:\/\/www.patients.ru\/en\t+7\t495 6122053\tAssociate Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tKazan\tRussian Rett Syndrome Asociation\twww.rettsyndrome.ru\t+7\t9872974440\tAssociate Member\tAPPROXIMATE\t55.830431\t49.066081\nRussian Federation\tMoscow\tSPIPORZ  Union of patients with rare diseases and rare disease patients organsiations\twww.spiporz.ru\t+7\t495 979 07 60\tAssociate Member\tAPPROXIMATE\t55.755826\t37.617300\nRussian Federation\tMoscow\tThe Association of primary immunodeficiency patients\twww.oppid.ru\t+7\t906793840\tFull Member\tAPPROXIMATE\t55.755826\t37.617300\nSerbia\tNovi Sad\tChild rare disease support and research association Life\twww.zivotorg.org\t+381\t21 442 331\tAssociate Member\tAPPROXIMATE\t45.267135\t19.833550\nSerbia\tBelgrade\tChildhood Cancer Parent Organisation \"Zvoncica\"\t\t+381\t1 11 324 61 69\tFull Member\tAPPROXIMATE\t44.786568\t20.448922\nSerbia\tNis\tLymphoma Patients' Association\twww.lipa.org.rs\t+381\t60 0 22 23 17\tAssociate Member\tAPPROXIMATE\t43.320902\t21.895759\nSerbia\tBelgrade\tNational Organization for Rare Diseases, Serbia\twww.norbs.rs\t+381\t66 667 27 07\tFull Member\tAPPROXIMATE\t44.786568\t20.448922\nSingapore\tSingapore\tRare Disorders Society (Singapore)\twww.rdss.org.sg\t+65\t\tAssociate Member\tAPPROXIMATE\t1.352083\t103.819836\nSlovakia\tBratislava\tDebra SR\twww.debra-slovakia.org\t+421\t90 342977\tFull Member\tAPPROXIMATE\t48.148596\t17.107748\nSlovakia\tBratislava\tOrganisation of Muscular Dystrophy in the Slovak Republic\twww.omdvsr.sk\t+421\t2 43 41 16 86\tFull Member\tAPPROXIMATE\t48.148596\t17.107748\nSlovakia\tPezinok\tSlovak Alliance of Rare Diseases\twww.sazch.sk\t+421\t905 225 630\tAssociate Member\tAPPROXIMATE\t48.289135\t17.266656\nSlovakia\tKosice\tSlovak Cystic Fibrosis Association\twww.cfasociacia.sk\t+421\t 903 608 445\tFull Member\tAPPROXIMATE\t48.716386\t21.261075\nSlovakia\tBardejov\tZdruzenie Ojedlinelych Genetickych Ochorenie\thttp:\/\/www.zogo.sk\/\t+421\t\tAssociate Member\tAPPROXIMATE\t49.294586\t21.275401\nSlovenia\tMenges\tAssociation of patients with blood diseases - Drustvo Bolnikv S Krvnimi Boleznimi\twww.drustvo-bkb.si\t+386\t031 649 735\tFull Member\tAPPROXIMATE\t46.165912\t14.571969\nSlovenia\tTrzin\tDebra Slovenia - Drustvo DEBRA Slovenija\twww.debra-slovenia.si\t+386\t31348303\tFull Member\tAPPROXIMATE\t46.129824\t14.557764\nSlovenia\tLjubljana\tEAMDA - European Alliance of Neuromuscular Disorders Associations\twww.eamda.eu\t+386\t1 47 20 500\tFull Member\tAPPROXIMATE\t46.056947\t14.505751\nSlovenia\tRavne na Koro\u0161kem\tFabry Patients Association Slovenia \/ Dru\u0161tvo bolnikov s Fabryjevo boleznijo Slovenije\t\t+386\t2 88 23 524\tFull Member\tAPPROXIMATE\t46.544832\t14.966044\nSlovenia\tLjubljana\tFoundation of Child Neurology\thttp:\/\/pednevro.pedkl.si\/english\/foundation\/\t+386\t1529273\tAssociate Member\tAPPROXIMATE\t46.056947\t14.505751\nSouth Africa\tPretoria\tPrimary Immunodeficiency Network of South Africa\twww.pinsa.org.za\t+27\t0823654663\tAssociate Member\tAPPROXIMATE\t-25.747868\t28.229271\nSouth Africa\tJohannesburg\tRare Disease Society of South Africa\t\"www.rarediseases.co.za \"\t+27\t\tAssociate Member\tAPPROXIMATE\t-26.204103\t28.047305\nSpain\tMadrid\tAcci\u00f3n y Cura para Tay-Sachs - ACTAYS\twww.actays.org\t+34\t646695675\tFull Member\tAPPROXIMATE\t40.416775\t-3.703790\nSpain\t Sabadell (Barcelona)\tAlianza Espa\u00f1ola de Familias de Von Hippel Lindau\twww.alianzavhl.org\t+34\t93 712 39 89\tFull Member\tAPPROXIMATE\t41.546275\t2.108613\nSpain\tBarcelona\tAsociaci\u00f3 Catalana de las Neurofibromatosis\thttp:\/\/www.acnefi.com\/castella\/gamhome.htm\t+34\t\tFull Member\tAPPROXIMATE\t41.385064\t2.173403\nSpain\tBarcelona\tAsociaci\u00f3 d'Afectats de Siringomi\u00e8lia\twww.siringomielia.org\t+34\t 639 25 33 56\tFull Member\tAPPROXIMATE\t41.385064\t2.173403\nSpain\tSevilla\tAsociaci\u00f3n Andaluza contra la Fibrosis Qu\u00edstica\twww.fibrosisquistica.org\/andaluza\/\t+34\t954 705 705\tFull Member\tAPPROXIMATE\t37.389092\t-5.984459\nSpain\tCordoba\tAsociaci\u00f3n Andaluza de Pacientes con S\u00edndrome de Tourette y Trastornos Asociados\twww.tourette.es\t+34\t627 57 37 06\tFull Member\tAPPROXIMATE\t37.888175\t-4.779383\nSpain\tMadrid\tAsociaci\u00f3n Artrogriposis M\u00faltiple Cong\u00e9nita\twww.amc-esp.blogspot.com\t+34\t91 3016464\tFull Member\tAPPROXIMATE\t40.416775\t-3.703790\nSpain\tOviedo - Asturias\tAsociacion Chiari y Siringomielia del Principado de Asturias\twww.chyspa.org\t+34\t638177690\tFull 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(Barcelona)\tMiquel Valls Foundation (Fundacion Privada Catalana de Esclerosi Lateral Amiotrofica)\twww.elacat.org\t+34\t93.766.59.69\tAssociate Member\tAPPROXIMATE\t41.613435\t2.653555\nSweden\tHovas\tAgrenska\twww.agrenska.se\t+46\t31 75 09 100\tFull Member\tAPPROXIMATE\t57.611389\t11.939167\nSweden\tSandared\tAorta Dissektion F\u00f6reningen Skandinavien\twww.aortadissektion.com\t+46\t768-281223\tFull Member\tAPPROXIMATE\t57.709936\t12.792410\nSweden\t B\u00e5stad\tEuropean Dysmelia Reference Information Centre\twww.edric.eu\t+46\t\tFull Member\tAPPROXIMATE\t56.427389\t12.847722\nSweden\tStockholm\tNeurologiskt Handikappades Riksf\u00f6rbund  \/ Swedish Association of persons with Neurological disabilities\twww.nhr.se\t+46\t8 67 77 010\tAssociate Member\tAPPROXIMATE\t59.329323\t18.068581\nSweden\tHuddinge\tPrader Willi Syndrome Association in Sweden\twww.prader-willi.se\t+46\t864 23 220\tFull Member\tAPPROXIMATE\t59.209773\t18.052167\nSweden\tOrebro\tPrim\u00e4r immunbrist 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Sanfilippo Suisse\twww.fondation-sanfilippo.org\t+41\t78 720 73 17\tAssociate Member\tAPPROXIMATE\t46.204391\t6.143158\nSwitzerland\tWaedenswil\tFoundation Orphanhealthcare\twww.orphanhealthcare.com\t+41\t44 586 82 27\tAssociate Member\tAPPROXIMATE\t47.229687\t8.671819\nSwitzerland\tBern\tFRAXAS - Association X Fragile Suisse\twww.fraxas.ch\t+41\t491 48 06\tFull Member\tAPPROXIMATE\t46.947974\t7.447447\nSwitzerland\tLausanne\tHAEi - Hereditary Angioedema International Association\thttp:\/\/www.haei.org\t+41\t\tAssociate Member\tAPPROXIMATE\t46.519653\t6.632273\nSwitzerland\t Nyon\tHHT-Swiss\twww.hhtswiss.org\t+41\t79 206 64 83\tAssociate Member\tAPPROXIMATE\t46.383268\t6.234785\nSwitzerland\tBern 7\tLeukemia Patient Advocates Foundation\twww.cmladvocates.net\t+41\t\tAssociate Member\tROOFTOP\t47.020911\t7.451298\nSwitzerland\tBern\tMarfan Foundation Switzerland (Marfan Stiftung Schweiz)\twww.marfan.ch\t+41\t31 312 11 22\tFull 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Member\tAPPROXIMATE\t25.066365\t121.524489\nMacedonia\tBitola\tLife with Challenges\thttp:\/\/challenges.mk\/?p=2288&lang=en\t+389\t70705446\tFull Member\tAPPROXIMATE\t41.029677\t21.329216\nMacedonia\tSkopje\tNational Alliance for Rare Diseases of R. 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Devon\tAlstrom Syndrome UK\twww.alstrom.org.uk\t+44\t1803 524238\tFull Member\tAPPROXIMATE\t50.461921\t-3.525315\nUnited Kingdom of Great Britain and Northern Ireland \tEdinburgh\tAnn Edgar Charitable Trust - Neuroendocrine Tumour Support\twww.taect.scot\t+44\t07976 510617\tFull Member\tAPPROXIMATE\t55.953252\t-3.188267\nUnited Kingdom of Great Britain and Northern Ireland \tBury\tAnnabelle's Challenge\twww.annabelleschallenge.org\t+44\t161 207 8337\tFull Member\tAPPROXIMATE\t53.593350\t-2.296605\nUnited Kingdom of Great Britain and Northern Ireland \tSouthampton\tAssociation for Glycogen Storage Disease\twww.agsd.org.uk\t+44\t01489 877 991\tFull Member\tAPPROXIMATE\t50.909700\t-1.404351\nUnited Kingdom of Great Britain and Northern Ireland \tTunbridge Wells\tAssociation for Multiple Endocrine Neoplasia Disorders\twww.amend.org.uk\t+44\t1892 516076\tFull Member\tAPPROXIMATE\t51.132377\t0.263695\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tAtaxia 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Sheffield\"\tEuropean Lung Foundation\twww.european-lung-foundation.org\/\t+44\t1142672875\tAssociate Member\tAPPROXIMATE\t53.381129\t-1.470085\nUnited Kingdom of Great Britain and Northern Ireland \tDerby\tEuropean Myasthenia Gravis Association\twww.eumga.eu\t+44\t1332 290219\tAssociate Member\tAPPROXIMATE\t52.922530\t-1.474619\nUnited Kingdom of Great Britain and Northern Ireland \tNottingham\tEuropean Tuberous Sclerosis Complex Association\twww.e-tsc.eu\t+44\t11 59 23 43 01\tFull Member\tAPPROXIMATE\t52.954783\t-1.158109\nUnited Kingdom of Great Britain and Northern Ireland \tAmersham,\tFabry International Network\twww.fabrynetwork.org\/\t+44\t 1494 766 633\tAssociate Member\tAPPROXIMATE\t51.675518\t-0.607241\nUnited Kingdom of Great Britain and Northern Ireland \tLancashire\tFetal Anti Convulsant  Syndrome Assocation\t\t+44\t1253 299161\tAssociate Member\tAPPROXIMATE\t53.763225\t-2.704405\nUnited Kingdom of Great Britain and Northern Ireland \tCambridge\tFindacure: The Fundaemental Diseases Partnership\twww.findacure.org.uk\t+44\t788 670 9633\tAssociate Member\tAPPROXIMATE\t52.205337\t0.121817\nUnited Kingdom of Great Britain and Northern Ireland \tManchester\tFOP Friends\twww.fopfriends.com\t+44\t161 282 0441\tFull Member\tAPPROXIMATE\t53.480759\t-2.242631\nUnited Kingdom of Great Britain and Northern Ireland \t Dursley, Gloucestershire\tGauchers Association UK\twww.gaucher.org.uk\t+44\t1453 54 92 31\tFull Member\tAPPROXIMATE\t51.678768\t-2.350518\nUnited Kingdom of Great Britain and Northern Ireland \t London\tGenetic Alliance UK\twww.geneticalliance.org.uk  \t+44\t20 7\u200b831 \u200b0883\tFull Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tSurrey\tInternational Brain Tumour Alliance\twww.theibta.org\t+44\t17 37 81 38 72\tAssociate Member\tAPPROXIMATE\t51.314759\t-0.559950\nUnited Kingdom of Great Britain and Northern Ireland \tWashington, Tyne and Wear\tInternational Niemann-Pick Disease Alliance\twww.inpda.org\t+44\t 191 416 1207 \tFull Member\tAPPROXIMATE\t54.897432\t-1.517366\nUnited Kingdom of Great Britain and Northern Ireland \tTorpoint\tIPOPI - International Patient Organization for Primary Immunodeficiencies\twww.ipopi.org\t+44\t1503 250 668\tFull Member\tAPPROXIMATE\t50.375290\t-4.194344\nUnited Kingdom of Great Britain and Northern Ireland \tWigan\tJoining Jack\twww.joiningjack.org\t+44\t773033448\tFull Member\tAPPROXIMATE\t53.545065\t-2.632507\nUnited Kingdom of Great Britain and Northern Ireland \tWinchester\tLeber's Hereditary Optic Neuropathy Society\twww.lhonsociety.org\t+44\t1962 840331\tFull Member\tAPPROXIMATE\t51.059771\t-1.310142\nUnited Kingdom of Great Britain and Northern Ireland \tAberdeen\tLymphangiomatosis & Gorham Disease Alliance Europe\twww.lgda.eu\t+44\t\tFull Member\tAPPROXIMATE\t57.149717\t-2.094278\nUnited Kingdom of Great Britain and Northern Ireland \tStourbridge\tMax Appeal\twww.maxappeal.org.uk\t+44\t1384 82 1227\tFull Member\tAPPROXIMATE\t52.456891\t-2.148731\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tMEBO Research\twww.meboresearch.org\t+44\t0800 0588015 \tAssociate Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tAmersham\tMPS Society\twww.mpssociety.co.uk\t+44\t345 3899901\tFull Member\tAPPROXIMATE\t51.675518\t-0.607241\nUnited Kingdom of Great Britain and Northern Ireland \tDerby\tmyaware\twww.myaware.org\/\t+44\t1332-290219\tFull Member\tAPPROXIMATE\t52.922530\t-1.474619\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tMyotubular Trust\twww.myotubulartrust.org\t+44\t7885309753\tFull Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tCannock, Staffordshire\tNewlife Foundation for Disabled Children\twww.bdfnewlife.co.uk\t+44\t1543 468 888\tFull Member\tAPPROXIMATE\t52.699941\t-2.021829\nUnited Kingdom of Great Britain and Northern Ireland \tTyne and Wear\tNiemann-Pick Disease Group UK\twww.niemann-pick.org.uk\t+44\t1453 519531\tFull Member\tAPPROXIMATE\t54.995184\t-1.566699\nUnited Kingdom of Great Britain and Northern Ireland \tBelfast\tNorthern Ireland Rare Disease Partnership\twww.nirdp.org.uk\t+44\t02891861765\tFull Member\tAPPROXIMATE\t54.597285\t-5.930120\nUnited Kingdom of Great Britain and Northern Ireland \tHatton Park , Warwick\tOne in a million - Pseudomyxoma Survivor\twww.pseudomyxomasurvivor.co.uk\t+44\t300 30 200 50\tAssociate Member\tGEOMETRIC_CENTER\t52.281003\t-1.577779\nUnited Kingdom of Great Britain and Northern Ireland \tWATFORD\tOrganisation for Anti-Convulsant Syndrome\twww.oacscharity.org\t+44\t020 8386 9271\tFull Member\tAPPROXIMATE\t51.656489\t-0.390320\nUnited Kingdom of Great Britain and Northern Ireland \tIlford\tPitt Hopkins UK\thttp:\/\/pitthopkins.org.uk\/\t+44\t\tFull Member\tAPPROXIMATE\t51.556619\t0.076251\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tPolycystic Kidney Disease Charity (PKDC)\twww.pkdcharity.org.uk\t+44\t20 7387 0543\tFull Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tDerby \tPrader Willi Syndrome Association UK\twww.pwsa.co.uk\t+44\t1332 365676\tFull Member\tAPPROXIMATE\t52.922530\t-1.474619\nUnited Kingdom of Great Britain and Northern Ireland \tDidcot\tPSC Support\twww.pscsupport.org.uk\t+44\t7971588715\tFull Member\tAPPROXIMATE\t51.608044\t-1.244840\nUnited Kingdom of Great Britain and Northern Ireland \tOxfordshire\tRare Autoinflammatory Conditions' Community UK\twww.raccuk.com\t+44\t07377091552\tAssociate Member\tAPPROXIMATE\t51.761206\t-1.246467\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tRare Diseases UK\twww.raredisease.org.uk\t+44\t020 7704 3141\tAssociate Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tWarley, Brentwood, Essex\tRing 20 Research and Support UK CIO\thttp:\/\/ring20researchsupport.co.uk\/\t+44\t 1708 403620\tAssociate Member\tAPPROXIMATE\t51.606081\t0.301624\nUnited Kingdom of Great Britain and Northern Ireland \tWarwickshire\tSpinal Muscular Atrophy Support UK\twww.smasupportuk.org.uk\t+44\t1789 267520\tFull Member\tAPPROXIMATE\t52.267135\t-1.467522\nUnited Kingdom of Great Britain and Northern Ireland \tBeverley\tStiff Person Support Group\twww.smssupportgroup.co.uk\t+44\t1482 868881\tFull Member\tAPPROXIMATE\t53.841963\t-0.435093\nUnited Kingdom of Great Britain and Northern Ireland \tExeter,  Devon\tSturge-Weber  UK\twww.sturgeweber.org.uk\t+44\t13 92 46 46 75\tFull Member\tAPPROXIMATE\t50.718412\t-3.533899\nUnited Kingdom of Great Britain and Northern Ireland \tSanderstead, Surrey   \tThe AADC Research Trust Children\u2019s Charity\twww.aadcresearch.org\t+44\t208 651 0264\tFull Member\tAPPROXIMATE\t51.334791\t-0.081587\nUnited Kingdom of Great Britain and Northern Ireland \tGlasgow\tThe Chromosome 18 Registry and Research Society (Europe)\twww.chromosome18eur.org\t+44\t141 357 0204\tAssociate Member\tAPPROXIMATE\t55.864237\t-4.251806\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tThe Cure & Action for Tay-Sachs (CATS) Foundation\twww.cats-foundation.org\t+44\t0776675904\tFull Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tEssex\tThe Fragile X Society\twww.fragilex.org.uk\/\t+44\t13 71 87 51 00\tFull Member\tAPPROXIMATE\t51.734331\t0.469089\nUnited Kingdom of Great Britain and Northern Ireland \tEdinburgh\tThe PBC Foundation (UK) Ltd\twww.pbcfoundation.org.uk\t+44\t0131 556 6811\tAssociate Member\tAPPROXIMATE\t55.953252\t-3.188267\nUnited Kingdom of Great Britain and Northern Ireland \tBelfast\tThe Ultra Rare Diseases, Disorders & Disabilities Foundation\twww.ultrarare-disease.uk\t+44\t0289 065 4471\tAssociate Member\tAPPROXIMATE\t54.597285\t-5.930120\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tTuberous Sclerosis Association\twww.tuberous-sclerosis.org\t+44\t1273 696955, ext. 3541\tFull Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tLivingston, Scotland\tUK Mastocytosis Support Group\twww.ukmasto.co.uk\t+44\t1506 431908\tFull Member\tAPPROXIMATE\t55.900708\t-3.518068\nUnited Kingdom of Great Britain and Northern Ireland \tOxted, Surrey\tUnique -  The Rare Chromosome Disorder Support Group\twww.rarechromo.org\t+44\t1 883 33 07 66\tFull Member\tAPPROXIMATE\t51.255714\t-0.000003\nUnited Kingdom of Great Britain and Northern Ireland \tLondon\tUnited Kingdom Thalassaemia Society\twww.ukts.org\t+44\t20 8882 0011\tFull Member\tAPPROXIMATE\t51.507351\t-0.127758\nUnited Kingdom of Great Britain and Northern Ireland \tShetland Isles\tUveitis Information Group\twww.uveitis.net\t+44\t845 604 5660\tFull Member\tAPPROXIMATE\t60.529651\t-1.265941\nUnited Kingdom of Great Britain and Northern Ireland \tMatlock, Derbyshire\tVasculitis UK (The Vasculitis 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