x
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)
Contact form
(+54) (0261) 4291987 o 0800 333 3353
de Lunes a Viernes de 08:00 hs a 12:30 hs
Australie
The Association of Genetic Support of Australasia: www.agsa-geneticsupport.org.au/
+61 2 9211 1462
Autriche
Forum Seltene Krankheiten http://www.forum-sk.at/
+43 (0)512 9003 70532
Belgique
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases. http://radiorgnl.squarespace.com/ http://radiorgfr.squarespace.com/
+32 478 727 703
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
+1-855 543 0550 (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
Espagne
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER)
Espagne
Servicio de Información y Orientación de FEDER
+34 918 221 725
Finlande
Harvinaiset-verkosto: www.harvinaiset.fi/english
France
Maladies Rares Info Services: www.maladiesraresinfo.org
De France : 01 56 53 81 36 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
Pays-Bas
Erfocentrum (http://www.erfelijkheid.nl)
033-3032110
Portugal
Linha Rara: http://www.linharara.pt/index.php
707 100 200
Roumanie
Centrul de informare pentru Boli Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080 080 1111
Royaume-Uni
Contact-a-family : www.cafamily.org.uk
0 808 808 3555
Royaume-Uni
CLIMB (Metabolic Diseases, UK)
(+44) (0)800 652 3181
(Open 10am - 4pm GMT)
Suède
The Swedish Information Centre for Rare Diseases: www.socialstyrelsen.se/en/rarediseases
+46-(0)31-786 5590
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)
Taïwan
Taïwan Foundation for Rare Disorders: www.tfrd.org.tw/english/
Formulaire de contact: www.tfrd.org.tw/english/contact/index.php
USA
NORD (National Organization for Rare Disorders): www.rarediseases.org
+1 (800) 999 6673
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)