x
Country
Organisation
By email
By phone
Australia
The Association of Genetic Support of Australasia: www.agsa-geneticsupport.org.au/
+61 2 9211 1462
Austria
Forum Seltene Krankheiten
http://www.forum-sk.at/
+43 (0)512 9003 70532
Belgium
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases.
http://radiorgnl.squarespace.com/
http://radiorgfr.squarespace.com/
+32 478 727 703
Bulgaria
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 (English speakers)
Canada
RQMO (Regroupement Québécois des Maladies Orphelines - Portail Info Maladies Rares Québec):
www.rqmo.org
+1-855 543 0550 (French speakers)
Denmark
Team Sjældne Handicap: www.csh.dk
+45 72 42 40 47
Germany
ACHSE (Allianz Chronischer Seltener Erkrankungen): www.achse-online.de
0049 (0) 30 3300708 21/-22
Korea
National Institute of Health rare incurable diseases center:
http://helpline.nih.go.kr/cdchelp/index.gst
043)719-8686, 8688
Finland
Harvinaiset-verkosto: www.harvinaiset.fi/english
France
Maladies Rares Info Services:
www.maladiesraresinfo.org
From France:
01 56 53 81 36
From abroad:
+33 156 538 136
Irland
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
Italy
Istituto Superiore di Sanità: Centro Nazionale Malattie Rare: www.iss.it/cnmr/
+39 800 89 69 49
Latin America
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
Netherlands
033-3032110
Norway
NKSD – National Advisory Unit on Rare Disorders
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
+47 800 41710
Portugal
707 100 200
Romania
Centrul de informare pentru Boli Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080 080 1111
Spain
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER)
Spain
Servicio de Información y Orientación de FEDER
+34 918 221 725
Sweden
The Swedish Information Centre for Rare Diseases: www.socialstyrelsen.se/en/rarediseases
The Swedish Information Centre for Rare Diseases: www.socialstyrelsen.se/en/rarediseases
+46-(0)31-786 5590
Switzerland
Helpline Info Maladies rares:
http://www.info-maladies-rares.ch/
+41 (0)848 314 372 (from Monday to Thursday – Open 9 am to 12 am and 2pm to 4pm)
Switzerland
Helpline Seltene Krankheiten:
http://www.kispi.uzh.ch/helpline-selten
+41 (0)44 266 35 35 (Tuesday 9 – 11 am and Thursday 14-16 pm)
Taiwan
Taiwan Foundation for Rare Disorders:
www.tfrd.org.tw/english/
UK
Contact-a-family : www.cafamily.org.uk
0 808 808 3555
UK
CLIMB (Metabolic Diseases, UK)
(+44) (0)800 652 3181
(Open 10am - 4pm GMT)
USA
NORD (National Organization for Rare Disorders): www.rarediseases.org
+1 (800) 999 6673
USA
Genetic and Rare Diseases Information Center (GARD):
www.rarediseases.info.nih.gov/GARD/ Default.aspx
Monday - Friday, 12:00 p.m. to 4:00 p.m. Eastern Time (888) 205-2311 (Phone)
(888) 205-3223 (TTY)
(301) 251-4925 (International Telephone Access Number)