APLAR: The Asia Pacific League of Associations for Rheumatology
Asia /Pacific http://www.ilar.org
Australian Leukodystrophy Support Group Inc.10 Mitchell Street Mentone 3194 Victoria Australia leuko@vicnet.net.au
Muscular Distrophy Association111 Boundary North Melbourne 3051 Australia Info@mda.org.au
Selsthilfegruppe Morbus Addison
Frau Beatrix Pop Egerseeweg 1/4
5302 HENNDORF
Austria
Gesellschaft für Mukopolysaccharidosen und ähnliche Erkrankungen Frau Michaela WEIGL Finklham 90 4075 BREITENAICH Austria http://www.mps-austria.at/
Von Recklinghausen Neurofibromatose Gesellschaft AustriaFrau Barbara GRIESSLER-ZITTNER Dollingerg. 2/ 4 1190 Wien Austria nf.ges@atnet.at
Selbsthilfegruppe Cornelia de Lange SyndromHainbach 356
2533 KLAUSENLEOPOLDSDORF Austria phu@ap.univie.ac.at
DEBRA-AUSTRIA - Interessengemeinschaft Epidermolysis bullosa und Verein zur Förderung der Epidermolysis bullosa-Forschung
Kontaktstelle für Betroffene
Bergengasse 5/2/12
1220 WIEN Austria http://www.schmetterlingskinder.at
Vlaamse Vereniging Cushing-Addison-AGS
Simonne Saintfiet Niellonstraat 4
2600 BERCHEM
Belgium
De Gekrenkte Haarspriet
Wilgendreef 9
2920 KALMTHOUT
Belgium
Belgian Association for Metabolic Diseases (BOKSAlice Nahonlann 7, 9120 Melsele None Belgium http://www.boks.be
LCH BelgiumBlandenstraat 53 3053 Haasrode Belgium www.lch.be
Mensen met Wijnvlekken en Hemangiomen vzw
Mutsaertstraat 12
1800 VILVOORDE
Belgium
A.F.R.H. : Association Francophone pour la Recherche sur l'Hidrosadénite Kalenbergstraat, 27 Bte 3
1700 DILBEEK Belgium http://www.afrh.fr/
CIB-liga vzw : Liga voor Chronische Inflammatoire Bindweefselziekten vzwBijendries 20 3530 HOUTHALEN-HELCHTEREN Belgium http://www.cibliga.be
Association Patients Sclerodermiques de Belgique33 rue Marcel Baudry 7503 Froyennes Belgium www.sclerodermie.be
Association Libre d'Information sur le Croissance de "Enfants Silver Russell"30, Rue du Brocsous 1325 CHAUMONT GISTOUX
Belgium www.alice.be
BOKS : Belgische oudervereniging van kinderen met een stofwisselingsziekte VZWAmoce Nahonlaan
9120 MELSELE Belgium http://www.boks.be/
DEBRA Belgium asbl : Association d'entraide pour l'Epidermolyse Bulleuse , DEBRA Belgium vzwBilzersteenweg 336
3700 TONGEREN Belgium http://www.debra-belgium.org
Kontaktgroep Marfan/Ehlers Danlos
Groot Speurestuk 1
9830 ST. MARTENS LATEM
Belgium
Groupe d'Entreaide des Syndromes d'Ehlers Danlos25 rue de la Motte B-1390 ARCHENNES Belgium www.gesed.com
S.B.C. : Société Belge de la Coeliaquie 9 Rue des Waides
4633 MELEN Belgium www.sbc-asbl.be
Zelfhulp Osteogenesis Imperfecta
Schoolstraat 3
3440 BUDINGEN Belgium http://www.zoi.be
Assoc. Francophone Belge de l'Ostéogenèse Imparfaite230/10 Clos Théodore Decuyper
1200 BRUXELLES Belgium http://www.afboi.be/
Association Naevi BelgiqueHerlinval 91 6983 La Roche en Ardenne Belgium www.naevi.com
FV Alopecia
Hof Van Watervliet
Oude Burg 27
8000 BRUGGE
Belgium
Histiocytosis Association - Brazil
SQN 312, bloco J, apto 509
Asa Norte CEP 70765-100 Brasília - DF Brazil roedel@apis.com.br
Instituto da TiroideRua Prof. Artur Ramos, 96-50 01454-903 Sao Paulo, SP Brazil medneto@uol.com.br
Associação de NeurofibromatoseRua Monte Alegre , 502 5° Andar - Perdizes CEP 05014-000 São Paulo/SP Brazil http://www.nf.org.br/
Association nationale pour l'intégration des personnes albinosBP 5588 OUAGADOUGOU Burkina Faso anipabf@yahoo.fr
Association nationale pour l'intégration des personnes albinosBP 5588 OUAGADOUGOU Burkina Faso anipabf@yahoo.fr
Canadian Society for Ectodermal Dysplasias250 The East Mall, Suite 1770 M9B 6L3 Toronto, Ontario Canada www.edscanada.org
Canadian Society for Ectodermal Dysplasias250 The East Mall, Suite 1770 M9B 6L3 Toronto, Ontario Canada www.edscanada.org
Canadian Immunodeficiencies Patient Organization362 Concession 12 Est
RR #2 Ontario
K0L 1Y0 Hastings Canada http://www.cipo.ca
Tuberous Sclerosis Canada Sclérose TubéreuseRay Marco, PO Box 332 TOJ 1AO Dunmore Canada www.tscst.org
Langer-Giedion Syndrome Association89 Ingham Avenue M4K 2W8 Toronto, Ontario Canada http://lgsa.net
Sjogren's Syndrome Association, Inc., (Association du Syndrome de Sjogren, Inc.)
1650 de Maisonneuve West
Suite 401
H3H 2P3 Quebec
Canada
Sjogren's Syndrome Association, Inc., (Association du Syndrome de Sjogren, Inc.)
1650 de Maisonneuve West
Suite 401
H3H 2P3 Quebec
Canada
Société de la sclérose systémique (Sclérodermie) du Québec incCasier postal 2 Succ. Bureau-Chef J3E 1X5 Ste-Julie, Québec Canada www.sclerodermie-quebec.qc.ca
Scleroderma Society of Canada95 Woodfield Road SW T2W 5K5 Calgary , AB Canada www.scleroderma.ca
Canadian Society for Ectodermal Dysplasias250 The East Mall, Suite 1770 M9B 6L3 Toronto, Ontario Canada www.edscanada.org
Canadian Porphyria Foundation487 Walker Ave, Box 1206 R0J 1H0 Neepawa, MB Canada www.cpf-inc.ca
Langer-Giedion Syndrome Association89 Ingham Avenue M4K 2W8 Toronto, Ontario Canada http://lgsa.net
Canadian Immunodeficiencies Patient Organization362 Concession 12 Est
RR #2 Ontario
K0L 1Y0 Hastings Canada http://www.cipo.ca
Canadian Society for Ectodermal Dysplasias250 The East Mall, Suite 1770 M9B 6L3 Toronto, Ontario Canada www.edscanada.org
Thyroid Foundation of Canada / La Fondation canadienne de la Thyroïde
797 Princess Street, Ste 304 ON K7L 1G1
KINGSTON, Canada www.thyroid.ca
Breast Cancer Society of Canada 331 rue Cooper Street N7V 1P2 Ontario None Canada http://www.bcsc.ca
Association Naevi Québec1360 Bordages Sud J2TT 3R5 St. Hyacinthe Canada www.naevi.com
Fondation canadienne de la maladie de Lyme2495 Reece Road BC V4T1N1 Westbank Canada www.canlyme.com
Sjogren's Syndrome Association, Inc., (Association du Syndrome de Sjogren, Inc.)
1650 de Maisonneuve West
Suite 401
H3H 2P3 Quebec
Canada
Canadian Society for Ectodermal Dysplasias250 The East Mall, Suite 1770 M9B 6L3 Toronto, Ontario Canada www.edscanada.org
Canadian Porphyria Foundation487 Walker Ave, Box 1206 R0J 1H0 Neepawa, MB Canada www.cpf-inc.ca
Canadian Society for Ectodermal Dysplasias250 The East Mall, Suite 1770 M9B 6L3 Toronto, Ontario Canada www.edscanada.org
Coffin-Siris support
Pat McCue
190 Kennedy Street
V9R 2H7 Nanaimo, British Columbia
Canada
Ataxia support group
c/o Rose Gallant
185 Loch Lomond Road
E2J 3S3 Saint John, NB
Canada
Association nationale des albinos de CentrafriqueBP 1868 BANGUI Centrafrique anaca.rca@yahoo.fr
Association nationale des albinos de centrafriqueBP 1868 BANGUI Centrafrique anaca.rca@yahoo.fr
Albinos sans frontières28 B, Quartier Mboloko, Commune de Matete BP 13.588 Kinshasa Congo www.asf-awb.org/fr/
Albinos sans frontières28 B, Quartier Mboloko, Commune de Matete BP 13.588 Kinshasa Congo www.asf-awb.org/fr/
Association for support families affected by phenylcetonuria from CroatiaZeljko Kontek , Pavla Loncara 42 10320 Sesvete Croatia http://www.fenilketonurija.hr
Centrum PKU Vinohrady
Czech
Danish Raynaud's & Scleroderma Association
Mr N B Sorensen Marievej 25
3060 Espergaerde
Danemark
Morbus Addison Foreningen Denmark
Skovbrynet 2, 7183 Randbøl, Denmark www.addison.dk
FNUG - ForeningeN af Unge med Gigt
(Danish Organisation of Youth with Rheumatism)
Phone: +45 86 11 85 21
Fax: +45 86 11 73 88
E-mail: fnug@fnug.dk
Website: www.fnug.dk
P.P. Ørums Gade 11, bygn. 10
8000 Århus C Denmark fnug@fnug.dk
www.fnug.dk
The EULAR Scleroderma Trials and Research group (EUSTAR)Departement of Medicine Section of Rheumatology Villa Monna Tessa Viale Pieraccini 18 50139 Florence (Italy) Europe http://www.eustar.org
European League Against RheumatismEular Executive Secretariat
Seestrasse 240
8802 Kilchberg
Switzerland Europe http://www.eular.org/
Harvinaisten ihotautien keskus - Suomen EB-yhdistysIholiitto ry
Karjalankatu 2 B
FIN-00520 HELSINKI Finland http://www.iholiitto.fi
Hengitysliitto HELI ry.
Harvinaisten hengityssairauksien resurssikeskus
Hoikan aluekeskus
Hoikantie 15
FIN-38100 KARKKU Finland http://www.hengitysliitto.fi
Assoc. du Syndrome d'Adams Oliverchez Mme Ledanois, 202 rue des Muraux 78410 Flins sur Seine France famille_libotte@yahoo.fr
GENESPOIR -Association Française des albinismes3 rue de la paix 35000 Rennes France www.genespoir.org
Association Sclérose Tuberleuse de Bourneville13 rue de Villemétrie, 60300 Senlis France www.astb.asso.fr
Association des Malades des syndromes Lyell et Stevens-Johnson4 rue Yves Toudic 75010 Paris France http://amalyste.free.fr/
Le sourire de Lucie contre le Sjögren-Larsson84 Rue Denis Papin, Villa la Fourmi 83100 Toulon France max.rad@libertysurf.fr
Association Française du Syndrome de Rubinstein-Taybi (A.F.S.R.T.)19 rue Chauffour 33000 Bordeaux France www.rubinstein-taybi.org
ACSAC-France : Fédération Nationale des Associations de Lutte Contre la Spondylarthrite Ankylosante et les Spondylarthropathies
ACSAC-France
Mairie de LANDIVISIAU
19 Rue Georges Clemenceau
29400 LANDIVISIAU France http://www.acsac-france.asso.fr
Association de Lutte contre la Spondylarthrite et les Spondylarthropathies AssociéesCité des Associations D.A.V.A. 93, La Canebière -boîte n°325
13233 MARSEILLE Cedex 20 France b.stenger@wanadoo.fr
Association Rétina France - "Vaincre les maladies de la vue" M. Claude FOUCHER
2 Chemin du Cabirol - BP 62 31771 COLOMIERS CEDEX France http://www.retina-france.asso.fr/
ANR : Association Neurofibromatoses et Recklinghausen 34 Vieux chemin de Grenade 31700 BLAGNAC France http://www.anrfrance.org
Société Française de Sénologie et de Pathologie MammaireClinique Gynécologique et Obstétricale
Hopital Civil
67091 STRASBOURG CEDEX France http://www.senologie.com/
Association Naevi France7 Passage des Halles, BP 25 74962 Cran France www.naevi.com
Eva Vaincra Austin
7 Rue Charles Péguy
55400 Etain
France
AMALYSTE : Association des malades des syndromes de Lyell et de Steven-Johnson4 Rue Yves Toudic
75010 PARIS France http://amalyste.free.fr/
SOS Rétinite - Association Nationale de Lutte contre la Cécité- Reconnue d'utilité publique
276 Impasse de la Baume
34000 MONTPELLIER France http://www.sos-retinite.com/
A Tire d'Aile - Soutien moral et financier aux familles touchées par une maladie héréditaire du métabolisme3 Rue du Planit
69110 SAINTE-FOY-LES-LYON France http://www.orpha.net/nestasso/ATD/
GENESPOIR -Association Française des albinismes3 rue de la paix 35000 Rennes France www.genespoir.org
A Tire d'Aile - Soutien moral et financier aux familles touchées par une maladie héréditaire du métabolisme3 Rue du Planit
69110 SAINTE-FOY-LES-LYON France http://www.orpha.net/nestasso/ATD/
Epidermolyse Bulleuse Association d'EntraideMutuelle du Midi (Mireille Nistasos)
16 La Canebière, BP 31866
13221 MARSEILLE CEDEX 01 France www.ebae.org
ANIPS : Association Nationale des Ichtyoses et Peaux Sèches PathologiquesFrance www.anips.org
AFDIAG : Association Française des Intolérants au Gluten15 Rue d'Hauteville
75010 PARIS France http://www.afdiag.org/
Association Française contre les Myopathies, France
Institut de Myologie,
Paris Cedex 13 75651 . Paris Cedex 13 France http://www.afm-france.org/
Netzwerk Hypophysen- und Nebennierenerkrankungen e.V.
German Pituitary and Adrenal Network
Waldstraße 34, D-91054 Erlangen Germany http://www.glandula-online.de/
DHAG : Deutsche Heredo-Ataxie-Gesellschaft. e.V.
Haußmannstr. 6
70188 STUTTGART Germany http://www.ataxie.de
IEB-DEBRA : IG Epidermolysis Bullosa e.V. DEBRA Deutschland Lahn-Eder-Straße 41
35216 BIEDENKOPF Germany http://www.ieb-debra.de
Gesellschaft für Mukopolysaccharidosen e.V. Herr Thomas BAUM Rupert Mayer Straße 13 63741 ASCHAFFENBURG Germany http://www.mps-ev.de
Silver-Russell-Syndrom und SGA im BKMF e.Vchez Maria Grimm, Landsberger Str. 79a 12623 Berlin Germany www.silver-russell.de
Von Recklinghausen Gesellschaft e.V.
z.H. Herrn Dr. V.-F. Mautner Langenhorner Chaussee 560
22419 Hamburg
Germany
DHG : Deutsche Hämophiliegesellschaft zur Bekämpfung von Blutungskrankheiten e.V. Neumann-Reichardt-Str. 34
22041 HAMBURG Germany http://www.dhg.de
Selbsthilfegruppe für PXE-Erkrankte DeutschlandsPeter Hof Bismark weg 21 57258 Freudenberg Germany www.pxe-groenblad.de
EHX e.V. : Erwachsenen-Histiozytose-X e.V.
Langenberger Str. 805
45257 ESSEN Germany http://www.ehx-ev.de/
LEONA - Verein für Eltern chromosomal geschädigter Kinder e.V.Auf dem Klei 2
44263 DORTMUND Germany http://www.leona-ev.de/
Mastozytose e. VHeike Schoenfeld
Krusestraße 24 47475 Kamp-Lintfort Germany www.mastozytose.de
Greek Gaucher and other lysosomal diseases association12 Polila Str., GERAKAS
153 44 ATHENS Greece gaucher@ath.forthnet.gr
Greek Gaucher and other lysosomal diseases association12 Polila Str., GERAKAS
153 44 ATHENS Greece gaucher@ath.forthnet.gr
Greek Gaucher and other lysosomal diseases association
12 Polila Str., GERAKAS
153 44 ATHENS
Greece
International Society for Behçets Disease (ISBD) International www.behcet.ws
International Patient Organization for Primary Immunodeficiencies
c/o PiA London None SW1H0QS London International http://www.ipopi.org
International Scleroderma Network7455 France Ave So #266 MN 55435 USA Edina, International http://www.sclero.org/
International Patient Organization for Primary Immunodeficiencies
c/o PiA London None SW1H0QS London International http://www.ipopi.org
Thyroid Federation International797 Princess St., Ste 304 K7L 1G1 Kingston, ON International www.thyroid.-fed.org
International Patient Organization for Primary Immunodeficiencies
c/o PiA SW1H0QS London None International http://www.ipopi.org/
Osteogenesis imperfecta federation EuropeInternational www.oife.org
The Grace Nolan FoundationUnit 11/12 City Link Park Forge Hill, Cork Ireland www.gracenolan.com
Irish Lupus Support Group LTD
Carmichael Centre
North Brunswick Street
Dublin 7 DUBLIN
Irland
Rubinstein Taybi Support Group Mrs Dr Linda FAIR
54 Knocklyon Green Templeogue 16 DUBLIN Irlande swanhygiene@eircom.net
AAMI : Associazione Amiloidosi Italianavia San Francesco, 12 38068 Rovereto Italie www.amiloidosi.it
Associazione malati di PorfiriaVia S. Gallicano, 25 00153 Rome Italie www.amapo.it
Associazione malati di PorfiriaVia S. Gallicano, 25 00153 Rome Italie www.amapo.it
Gruppo Italiano Affeti dalla Sindrome di GorlinVia Trento 139 72023 Mesagne Italie bi.lly@libero.it
Fondazione Italiana HHTStudio Associato Cremonesi-Gelati , Via S. Giovanni 38 29100 Piacenza Italie www.hht.it
ABM : Associazione per la Tutela del Bambino con Malattie MetabolicheVia Gaetano Donizetti 106
20052 MONZA (MI) Italy http://xoomer.virgilio.it/abm
AIMPS : Associazione Italiana Mucopolisaccaridosi e Malattie Affini - ONLUS Sig Flavio BERTOGLIO Via Savona 13 20144 Via Savona 13 Italy http://www.mucopolisaccaridosi.it
ASSOCIAZIONE NEURO FIBROMATOSI (A.N.F.)
Via Milano 21/b,
43100 Parma,
Italy
APAI : Associazione Patologie Autoimmuni InternazionaleVia degli Uliveti 8
64029 SILVI MARINA (TE) Italy http://www.assoc-apai.org
AIRI LCH : Associazione Italiana Ricerca Istiocitosi a Cellule di Langerhans - ONLUSVia Aleardi 78
30174 (VE) MESTRE Italy http://www.istiocitosi.org
AIP : Associazione Immunodeficienze Primitive - ONLUS Via del Medolo 2
25123 BRESCIA Italy http://www.aip-it.org/
Gruppo Italiano Affetti dalla Sindrome di Gorlin - ONLUS
Via Trento 139
72023 MESAGNE (BR)
Italy
ABM : Associazione per la Tutela del Bambino con Malattie MetabolicheVia Gaetano Donizetti 106
20052 MONZA (MI) Italy http://xoomer.virgilio.it/abm
ABM : Associazione per la Tutela del Bambino con Malattie MetabolicheVia Gaetano Donizetti 106
20052 MONZA (MI) Italy http://xoomer.virgilio.it/abm
Associazone Italiana Osteogenesi ImperfettaVia C, Montaverdi 12 23887 Olgiate Molgora Italy http://www.asitoi.it
DEBRA ITALIA : Associazione per la Ricerca sull'Epidermolisi Bollosa Distrofica Via Gerani 23 (zona Belsito)
95045 MISTERBIANCO (CT) Italy http://www.debraitalia.org
Gruppo Italiano per la lotta alla SclerodermiaVia Sant'Orsola 15 20123 Milano Italy www.sclerodermia.net
Associazione Italiana lotta alla SclerodermiaVia Scrima 29 60127 Ancoma Italy www.ails.it
ABM : Associazione per la Tutela del Bambino con Malattie MetabolicheVia Gaetano Donizetti 106
20052 MONZA (MI) Italy http://xoomer.virgilio.it/abm
Associazione Italiana Basedowiani e Tiroidei
Emma Bernini, President
c/o Centro Minerva
Via Mazzini 6 43100 Parma Italy emma99@libero.it
COMETA ASMME : Associazione Studio Malattie Metaboliche Ereditarie - ONLUSVia Vittorio Veneto 12/A
35020 LEGNARO (PD) Italy http://www.cometaasmme.org
ABM : Associazione per la Tutela del Bambino con Malattie MetabolicheVia Gaetano Donizetti 106
20052 MONZA (MI) Italy http://xoomer.virgilio.it/abm
Associazone Malatiia di BehcetViale Bruno Rizzieri 67 00173 ROMA Italy www.behcet.it
AISA : Associazione Nazionale Lotta alle Sindromi Atassiche - ONLUS Via Cina 91 00144 Roma Italy http://www.atassia.it/
ATDDM : Associazione Nazionale Atassia Teleangiectasia "Davide De Marini" - ONLUS Via Dolomiti, 28 61032 Fano Italy http://www.mobilia.it/atddm/
A.N.A.A.- Associazione Nazionale Alopecia AreataVia Fruili, n° 4 56124 Pisa Italy www.anaa.it
COMETA ASMME : Associazione Studio Malattie Metaboliche Ereditarie - ONLUSVia Vittorio Veneto 12/A
35020 LEGNARO (PD) Italy http://www.cometaasmme.org
ABM : Associazione per la Tutela del Bambino con Malattie Metaboliche
Via Gaetano Donizetti 106
20052
MONZA (MI) Italy http://xoomer.virgilio.it/abm
Hokkaido Behçets Association
Ms. Sachiko Hirata
Nishi 10-chome
Minami 4-jo
Chuo-ku Sapporo
Hokkaido 064-8506 Japan ssappo@yahoo.co.jp
Thyroid Foundation of Japan
, CBON Queen Building 4th floor, Roppongi 7-18-12, Minato-ku 106-0032 Tokyo Japan www.hata.ne.jp/tfj/
PXE NederlandRandwijcklaan 19 1181 Amstelveen Netherland www.pxe.nl
NVACP (Dutch Addison and Cushing Society)Piet Heinlaan 26 1403 TZ Bussum Netherlands http://www.nvacp.nl/
ELA
Evreuxlaan
5627 Eindhoven
Netherlands
+31 40 41 28 75
De Nederlandse Sturge-Weber VerenigingNetherlands www. nswv.nl
Stichting Rubinstein-Taybi Syndroom Frans Huibers Ritzema Bosweg 53 6706 BC Wageningen Netherlands www.rtsyndroom.nl
ELA
Evreuxlaan
5627 Eindhoven
Netherlands
+31 40 41 28 75
Stichting LCH HollandWindgatseweg 6 3235 NX Rockanje Netherlands www.histio.nl
Stichting Klippel-Trenaunay Nederland
Wattlaan 3, 3553 GW Utrecht Netherlands www.sktn.nl
Fabry Support and Informatie Groep NederlandNetherlands www.fabry.nl
NVACP (Dutch Addison and Cushing Society)Piet Heinlaan 26 1403 TZ Bussum Netherlands http://www.nvacp.nl/
Hett Najjar FondsNwe 's Gravelandseweg 82 , 1406 NJ Bussum Netherlands www.najjar.nl
ADCA-Vereniging Nederland
Fazantenkamp 839,
NL-3607 EC Maarssen
Netherlands
Ehlers-Danlos Foundation of New Zealand Craggy Range Road, R.D.12, Havelock North, Hawkes Bay, New Zealand www.edfnz.org.nz
Barne- og ungdomsrevmatikergruppen, BURG
(The Norwegian organisation for children and youth with rheumatism)
Postboks 2653 Solli
203 Oslo Norway burgnorge@rheuma.nowww.burg.no
Stowazy Szenie Mlodych Chorych
Na Przewlekle Zapalenie Stawow
ul. Chociszewskiego 56 60-261 Poznan Poland www.rzs.p9.pl
Associação Portuguesa dos Doentes com Intolerância ao Glúten Apartado 41005
1500 LISBOA CODEX Portugal filomena@eurotema.pt
ANDAI : Associação Nacional de Doentes com Artrite e outros Reumatismos da InfânciaRua Passos Manuel, 85 3º Dto
1150 - 258 LISBOA Portugal http://www.andai.org
Associação Portuguesa de NeurofibromatoseLucia Lemos, Rua Marquesa de Alorna 2, 3R/C Atelier, 2675-781 RAMADA Portugal lucialemos.advg@iol.pt
Associação Portuguesa de Fenilcetonúria e Outras Doenças Metabólicas
Instituto de Genética Médica,Praca Pedro Nunes, 88
4099-028 PORTO
Portugal
Raríssimas : Associação Nacional de Deficiências Mentais e Raras
Rua Major Rosa Bastos, 39
2670-502 LOURES Portugal http://www.rarissimas.org
Raríssimas : Associação Nacional de Deficiências Mentais e Raras
Rua Major Rosa Bastos, 39
2670-502 LOURES Portugal http://www.rarissimas.org
Núcleo de Epidermólise Bolhosa - LPDM
Rua do Sítio ao Casalinho da Ajuda
1349-011 LISBOA
Portugal
Thyroid Foundation of St. Petersburg
Russia
E-mail: "Professor" Medical Centre 42 Chaykovsky St. 191123 St Petersburg 191123 Russia gasparyan@peterlink.ru
Association nationale des albinos du Sénégal
BP 3046 THIES
Sénégal
Association nationale des albinos du Sénégal
BP 3046 THIES
Sénégal
Albinism Society of South Africa
PO BOX 9881 JOHANNESBURG
South Africa
Albinism Society of South Africa
PO BOX 9881 JOHANNESBURG
South Africa
ASEDH : Asociación Síndromes de Ehlers-Danlos e Hiperlaxitudc/ Plutón, 43, At, 1ª
8035 BARCELONA Spain http://www.asedh.org
Associacio catalana d'Ataxies hereditariesGran Via de les Corts Catalanes, 562, pral. 2
8011 Barcelona Spain info@ataxie.nl www.ataxie.nl
The Spanish Porphyria Association,Mrs Rosario Fernandez Arcangel San Rafael, 12, 6°, 23 41010 Sevilla Spain porfíria.es@terra.es
AMAPAR : Asociación Madrileña de Pacientes con Artritis Reumatoidec/ Cartagena 99, 2º B
28002 MADRID Spain http://www.amapar.org/
The Spanish Porphyria Association,Mrs Rosario Fernandez Arcangel San Rafael, 12, 6°, 23 41010 Sevilla Spain porfíria.es@terra.es
Associacion Ataxias hereditariasc/ Poeta Alberola, 25, B
46018 Valencia Spain -
Swedish Porphyria Association (Riksföreningen mot Porfyrisjukdomar )Karolinska Universitetssjukhuset Huddinge C2 71 141 86 STOCKHOLM Sweden http://home.swipnet.se/rmp/
NF-föreningen i Sverige
Ordförande Anita Engström, Atrentuna Nylunda
743 91 Storvreta
Sweden
Swedish Porphyria Association (Riksföreningen mot Porfyrisjukdomar )Karolinska Universitetssjukhuset Huddinge C2 71 141 86 STOCKHOLM Sweden http://home.swipnet.se/rmp/
Sweden Ehlers-Danlos Syndrome National Association Sweden Britta Berglund
Björkvägen 77
147 33 Tumba Sweden www.ehlers-danlos.se
The Dercum Group
P.O. Box 1251
221 05 Staffanstorp
Sweden
Association Tunisienne de Lutte Contre le Cancer
Imm. SNIT Boulevard du 9 Avril 1938
1006 Tunis Tunisia http://www.atcc.org.tn/
Association Tunisienne de Lutte Contre le Cancer
Imm. SNIT Boulevard du 9 Avril 1938
1006 Tunis Tunisia http://www.atcc.org.tn/
Association Tunisienne de Lutte Contre le Cancer
Imm. SNIT Boulevard du 9 Avril 1938
1006 Tunis Tunisia http://www.atcc.org.tn/
Association of Behçet Patients
Çetin Ezber (Secretary)
IU Cerrahpasa Tip Fakultesi
Ic Hastaliklari Anabilim Dali
Romatoloji Bilim Dali 34303 Cerrahpasa Istanbul Turkey hyazici@attglobal.net
Behcet's Syndrome Society3 Church Close RG17 8PU Lambourn HUNGERFORD Berks UK www.behcets.org.uk
Dyskeratosis congenita societyHammersmith Hospital
Commonwealth Building, 4th Floor
Du Cane Road W12 ONN London UK i.dokal@imperial.ac.uk
TMA (The Myositis Association)
Myositis Support Group146 Newton Road SO19 9HR Woolston Southhampton Hampshire UK www.myositis.org.uk
Degos Patients Support NetworkWren Cottage
53 Mill Road Avenue BN16 4HX
Angmering UK www.degosdisease.com
Toxic Shock Syndrome Information ServicePO Box 450
GU7 1GR
Godalming,
Surrey UK www.toxicshock.com
British Sjogren's Syndrome AssociationSomerset House, Temple Street B2 5DJ Birmingham UK www.bssa.uk.net
British Sjogren's Syndrome AssociationSomerset House, Temple Street B2 5DJ Birmingham UK www.bssa.uk.net
The Society for Mucopolysaccharide Diseases 46 Woodside Road HP6 6AJ Amersham, Buckinghamshire UK www.mpssociety.co.uk
Raynauds and Scleroderma Association112 Crewe Rd ST7 2JA Alsager, Cherchire UK www.raynauds.org.uk
The Histiocytosis Research Trust18 Western Road, Wylde Green, West Midlands. B73 5SP Sutton Coldfield UK http://www.hrtrust.org/
British Thyroid FoundationPO Box 97, Clifford LS23 6XD Wetherby, West Yorkshire UK www.btf-thyroid.org
British Sjogren's Syndrome AssociationSomerset House, Temple Street B2 5DJ Birmingham UK www.bssa.uk.net
Behcet's Organisation WorldwidePO Box 27 TA23 OYJ Watchet Somerset UK www.behcets.org
Bloom's Syndrome Registry
NY Blood Center
310 East 67th St
10021
New York, NY
U°SA
The Sjögren's Syndrome Foundation8120 Woodmont Ave, Suite 530 20814 Bethesda, MD USA www.sjogrens.org
National Foundation for Ectodermal DysplasiaPO Box 114, 410 East Main street 62258-0114 Mascoutah, IL USA www.nfed.org
Association for Neuro-Metabolic Disorders
5223 Brookfield Lane OH 43560-1809 Sylvania USA VOLK4OLKS@aol.com
Fabry Support and Information Group108 NE 2nd St, Suite C, PO Box 510 64020 Concordia, MO USA www.fabry.org
EB Medical Research Foundation130 Sandringham Rd 94611 Piedmont, CA USA www.ebkids.org
National Registry for Ichthyosis and Related Disorders University of Washington
Dermatology Department, Box 356524 98195-6524 Seattle, WA USA www.skinregistry.org
Foundation for Ichtyosis and Related Skin Types1601 Valley Forge Road 19466 Landsdale, PA USA www.scalyskin.org
Ehlers-Danlos National Foundation3200 Wilshire Blvd, suite 1601, South Tower 90010 Los Angeles, CA USA www.ednf.org
National Foundation for Ectodermal DysplasiaPO Box 114, 410 East Main street 62258-0114 Mascoutah, IL USA www.nfed.org
Dubowitz Syndrome Parent Support NetworkP.O. Box 2441 47591 Vincennes, IN USA inattic@aol.com
Gluten Intolerence Group of North America15110 10th Avenue SW, Ste A 98166 Seattle, WA USA www.gluten.net
The Myositis Association1233 20th St. NW, Suite 402 20036 Washington USA www.myositis.org
Cushing's Support and Research Foundation65 E India Row, Suite 22B 02110 Boston, MA USA www.csrf.net
American Autoimmune
Related Diseases Association
22100 Gratiot Ave.
MI 48021 E. Detroit USA http://www.aarda.org/
National Niemann-Pick Disease FoundationPO Box 49, 415 Madison ave 53538 Ft. Atkinson, WI USA www.nnpdf.org
Nevus Outreach Inc1601 Madison Blvd 74006 Bartlesville, OK USA www.nevus.org
BCCNS Life support NetworkPO Box 321 44021 Burton, Ohio USA www.bccns.org
Nail Patella Syndrome Worldwide25826 Norrington Square 20152 South Riding, VA USA www.nailpatella.org
National Foundation for Ectodermal DysplasiaPO Box 114, 410 East Main street 62258-0114 Mascoutah, IL USA www.nfed.org
National Foundation for Ectodermal DysplasiaPO Box 114, 410 East Main street 62258-0114 Mascoutah, IL USA www.nfed.org
Xeroderma Pigmentosum Registry
Univ of Medicine and Dentistry of NJ
Department of Path
07103-2714 Newark, NJ
USA
Xeroderma Pigmentosum Society437 Snydertown Rd 12521 Craryville, NY USA www.xps.org
The National Organisation for Albinism and Hypopigmentation (NOAH)P.O. Box 959 03826-0959 East Hampstead, NH USA www.albinism.org
American Vitiligo Research FoundationPO Box 7540 33758 Clearwater. FL USA www.avrf.org
Tuberous Sclerosis Alliance801 Roeder Rd, Suite 750 20910 Silver Spring, MD USA www.tsalliance.org
Stevens Johnson Syndrome FoundationPO Box 350333 80035-0333 Westminster, CO USA www.sjssupport.org
The Sjögren's Syndrome Foundation8120 Woodmont Ave, Suite 530 20814 Bethesda, MD USA www.sjogrens.org
Foundation for Ichtyosis and Related Skin Types1601 Valley Forge Road 19466 Landsdale, PA USA www.scalyskin.org
The Sjögren's Syndrome Foundation8120 Woodmont Ave, Suite 530 20814 Bethesda, MD USA www.sjogrens.org
Juvenile Scleroderma Network1204 West 13th Street 90731 San Pedro, CA USA www.jsdn.org
ISMRD
The International Society for Mannosidosis & Related Diseases, Inc1030 Saxon Hill Drive 21030 Cockeysvill, MD USA www.mannosidosis.org
Sanfilippo Syndrome Medical Reasearch Foundation, IncPost Office Box 571 68010-0571 Boys Town, NE USA www.juliashope.org
Russell-Silver Syndrome Network
448 North Macombe St.
48161 Munro, Michigan
USA
Association for Children with Russell-Silver Syndrome, Inc
22 Hoyt Street
07940-1604 Madison, NJ
USA
Russell-Silver Syndrome Support Networkc/o Magic Foundation, 1327 N. Harlem 60303 Oak Park, IL USA www.magicfoundation.org
Histiocytosis Association of America72 East Holly Avenue, Suite 101 08071
Pitman,
New Jersey USA www.histio.org
The National NF Foundation95 Pine Street - 16th Floor NY 10005 New York USA http://www.nf.org/
National Foundation for Ectodermal DysplasiaPO Box 114, 410 East Main street 62258-0114 Mascoutah, IL USA www.nfed.org
Platelet Disorder Support Association : ITP People PlaceP.O. Box 61533 20859
Potomac, MD USA www.itppeople.org
National Association for Pseudoxanthoma Elasticum, Inc8674 Manchester Rd, Suite 200 63144-2724 St. Louis, MO USA www.pxenape.org
PXE International4301 Connecticut Ave, NW, Suite 404 20008-2369 Washington, DC USA www.pxe.org
Progressive Osseous Heteroplasia Association33 Stonehearth Square 60525 Indian Head Park, IL USA www.pohdisease.org
MACPAD : The Mid-Atlantic Connection for PKU and Allied DisordersPO Box 6806 17607-6086 Lancaster, PA USA www.macpad.org
National PKU News6869 Woodlawn Ave. NE #116 98115 Seattle, WA USA www.pkunews.org
Children's PKU Network (CPN)3790 Via De La Valle, Ste 120 92014
Del Mar, CA USA www.pkunetwork.org
International Peutz-Jeghers Support Group
Center for Medical Genetics
21287-4922 Baltimore MD
USA
The International Pemphigus Foundation 1540 River Park Drive, Suite 208 95815 Sacramento, California USA www.pemphigus.org
Pallister-Killian Family Support Group
3700 Wyndale Court
76109 Fort Worth, TX
USA
Pachyonychia Congenita Project2326 East Heritage Way, Suite B 84109 Salt Lake City, UT USA www.pachyonychia.org
Chidren's Brittle Bones Foundation7701 95th Street 53158 Plaisant Prairie, WI USA www.cbbf.org
Osteogenesis imperfecta foundation804 West Diamond Ave, Suite 210 20878 Gaithersburg, MD USA www.oif.org
ILADS - International Lyme and Associated Diseases SocietyPO Box 341461 208271461 Bethesda, MA USA www.ilads.org
Lyme Disease Network of New Jersey43 Winton Rd 08816 East Brunswick, NJ USA www.lymenet.org
Mycosis Fungoides Network
Department of Dermatology
Pavillion A3
45267-0523 Cincinnati, OH
USA
Corporation for Menkes Disease
5720 Buckfield Ct
46804 Fort Wayne, IN
USA
American Lyme Disease FoundationMill Pond Offices,
293 Route 100 10589 Somers, New York USA www.aldf.com
Lupus Foundation of America2000 L Street, NW Suite 710 20036 Washington, DC USA www.lupus.org
Histiocytosis Association of America72 East Holly Avenue, Suite 101 08071
Pitman,
New Jersey USA www.histio.org
National Registry for Ichthyosis and Related Disorders University of Washington
Dermatology Department, Box 356524 98195-6524 Seattle, WA USA www.skinregistry.org
International Hyperhidrosis Society18 South 3rd Street 19106 Philadelphia, PA USA www.sweathelp.org
The National Organisation for Albinism and HypopigmentationP.O. Box 959 03826-0959 East Hampstead, NH USA www.albinism.org
Hermansky Pudlak Syndrome networkOne South Rd 11771-1905 Oyster Bay, NY USA www.hpsnetwork.org
HHT Foundation International, IncPO Box 329 21111 Monkton, MD USA www.hht.org
National Foundation for Ectodermal DysplasiaPO Box 114, 410 East Main street 62258-0114 Mascoutah, IL USA www.nfed.org
National Grave's Disease FoundationPO Box 8387 32006 Fleming Island, FL USA www.ngdf.org
American Thyroid Association6066 Leesburg Pike, Suite 550 22041 Falls Church, VA USA www.thyroid.org
Thyroid Foundation of AmericaOne Longfellow Place, Suite 1518 02114 Boston, MA USA www.allthyroid.org
Cicatricial Alopecia Research FoundationPO Box 64158 90064 Los Angeles, CA USA www.carfintl.org
The National Organisation for Albinism and HypopigmentationP.O. Box 959 03826-0959 East Hampstead, NH USA www.albinism.org
Chilren's Craniofacial Association13140 Coit Rd. Suite 307 75240 Dallas, TX USA www.ccakids.com
Organic Acidemia Association13210 35th Avenue 55441 Plymouth, MI USA www.oaanews.org
CdLS-USA foundation302 West Main Street, # 100 06001 Avon, Connecticut USA www.cdlsusa.org
ABDA - American Behcets Disease Assoc.PO Box 19952 79114 Amarillo, Texas USA www.behcets.com
National Ataxia Foundation2600 Fernbrook Lane
MN 55447 Minneapolis USA www.ataxia.org
Amyloidosis Network International
7118 Cole Creek Drive
77092 Houston, TX
USA
The National Organisation for Albinism and Hypopigmentation (NOAH)P.O. Box 959 03826-0959 East Hampstead, NH USA www.albinism.org
A Tire d'Aile - Soutien moral et financier aux familles touchées par une maladie héréditaire du métabolisme 3 Rue du Planit
69110 SAINTE-FOY-LES-LYON http://www.orpha.net/nestasso/ATD/
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