Pays
Organisation
Par email
Par téléphone
Allemagne
ACHSE (Allianz
Chronischer Seltener Erkrankungen): www.achse-online.de
























0049 (0) 30 3300708 21/-22
Amérique Latine
GEISER (Grupo de Enlace, Investigacion y Soporte Enfermedades Raras)
(+54) (0261) 4291987
o 0800 333 3353
de Lunes a Viernes de 08:00 hs a 12:30 hs
de Lunes a Viernes de 08:00 hs a 12:30 hs
Australie
Genetic Alliance Australia:
https://www.geneticalliance.org.au/
Rare Voices Australia:
https://rarevoices.org.au/
https://www.geneticalliance.org.au/
Rare Voices Australia:
https://rarevoices.org.au/
+61 2 9295 8359
+61 (0)499 549 629
+61 (0)499 549 629
Belgique
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases.
https://www.radiorg.be/nl/contact/
+32 (0)478 72 77 03
Bulgarie
ICRDOD
(Information Center for Rare Diseases and Orphan
Drugs):
www.raredis.org
+359
(0)32 57
57 97
Canada
CORD (Canadian
Organization for Rare Disorders): www.raredisorders.ca
+1-877
302
7273 (anglophone)
Canada
RQMO (Regroupement
Québécois des Maladies Orphelines - Portail Info Maladies Rares Québec):
www.rqmo.org
+1-819-943-2854 (francophone)
Corée
National Institute of Health rare incurable diseases center:
http://helpline.nih.go.kr/cdchelp/index.gst
043)719-8686, 8688
Danemark
Team Sjældne Handicap: https://socialstyrelsen.dk/handicap/sjaeldne-handicap
+45 72 42 40 47
France
Maladies Rares
Info Services:
www.maladiesraresinfo.org
De France :
Numéro vert 0800 40 40 43
De l'étranger : +33 156 538 136
De l'étranger : +33 156 538 136
Irlande
Organization: National Rare Diseases Office Information Line:
www.rarediseases.ie
By phone: 1 800 24 0 365 in Ireland
+353 1 878 5065 from abroad
Italie
Istituto
Superiore di Sanità: Centro Nazionale Malattie
Rare:
www.iss.it/cnmr/
+39
800 89 69
49
Norvège
NKSD – National Advisory Unit on Rare Disorders
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
+47
800 41710
Roumanie
Centrul de
informare pentru Boli
Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080
080 1111
Suède
The Swedish Information Centre for Rare Diseases: https://www.agrenska.se/Sallsynta-diagnoser/informationscentrum-for-sallsynta-halsotillstand-vid-Agrenska/



































031- 750 92 00
Suisse
Helpline Info Maladies rares: http://www.info-maladies-rares.ch/
+41 (0)848 314 372 (lundi - jeudi: 9h-12h et 14h-16h)
Suisse
Helpline Seltene Krankheiten: http://www.kispi.uzh.ch/helpline-selten
+41 (0)44 266 35 35 (mardi 9 -11h et jeudi 14h-16h)
Suisse
Helpline für Betroffene und Angehörige - Netzwerk Rare Diseases Nordwest und Zentralschweiz:
https://www.ukbb.ch/de/Rare-Diseases.php
https://www.ukbb.ch/de/Rare-Diseases.php
Formulaire de contact:
https://www.ukbb.ch/de/konaktformular-rare-diseases.php
https://www.ukbb.ch/de/konaktformular-rare-diseases.php
+41 61 704 10 40 (Lundi à Vendredi, 9h - 12h et 14h-17h)
Taïwan
Taïwan
Foundation for Rare Disorders: www.tfrd.org.tw/english/
Formulaire de
contact:
www.tfrd.org.tw/english/contact/index.php
USA
Genetic and
Rare Diseases Information Center (GARD):
http://www.rarediseases.info.nih.gov/ GARD/Default.aspx
Formulaire de
contact:
http://www.rarediseases.info.nih.gov/GARD/ EmailForm.aspx
Lundi
-
Vendredi, 12:00 - 16:00
Eastern Time
(888) 205-2311 (Par téléphone)
(888) 205-3223 (par TTY)
(301) 251-4925 (Numéro de téléphone pour l'international)