País
Organização
Por email
Por telefone
Alemanha
ACHSE (Allianz
Chronischer Seltener Erkrankungen): www.achse-online.de
























0049 (0) 30 3300708 21/-22
América Latina
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
Austrália
The
Association of Genetic Support of Australasia:
www.agsa-geneticsupport.org.au/
www.agsa-geneticsupport.org.au/
+61 2 9211 1462
Belgio
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases.
https://www.radiorg.be/nl/
https://www.radiorg.be/fr/
+32 (0)478 72 77 03 [NL]
+32 (0)473 54 18 66 [FR]
+32 (0)473 54 18 66 [FR]
Bulgária
ICRDOD
(Information Center for Rare Diseases and Orphan
Drugs): www.raredis.org
+359 (0)32 57
57 97
Canadá
CORD (Canadian
Organization for Rare Disorders): www.raredisorders.ca
+1-877 302
7273 (English speakers)
Canadá
RQMO (Regroupement
Québécois des Maladies Orphelines - Portail Info Maladies Rares Québec):
www.rqmo.org
www.rqmo.org
+1-819-943-2854 (French speakers)
Coreia
National Institute of Health rare incurable diseases center:
http://helpline.nih.go.kr/cdchelp/index.gst
043)719-8686, 8688
Dinamarca
Team Sjældne Handicap: https://socialstyrelsen.dk/handicap/sjaeldne-handicap
+45 72 42 40 47
EUA
Genetic and
Rare Diseases Information Center (GARD):
www.rarediseases.info.nih.gov/GARD/ Default.aspx
Contact form:
www.rarediseases.info.nih.gov/GARD/ EmailForm.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)
França
Maladies Rares
Info Services: www.maladiesraresinfo.org
From France:
01 56 53 81 36
From abroad:
+33 156 538 136
Irlanda
Organization: National Rare Diseases Office Information Line:
www.rarediseases.ie
www.rarediseases.ie
By phone: 1 800 24 0 365 in Ireland
+353 1 878 5065 from abroad
+353 1 878 5065 from abroad
Itália
Istituto
Superiore di Sanità: Centro Nazionale Malattie Rare:
www.iss.it/cnmr/
+39 800 89 69
49
Noruega
NKSD – National Advisory Unit on Rare Disorders
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser) >
www.sjeldne-diagnoser.no/
+47
800 41710
Roménia
Centrul de
informare pentru Boli
Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080 080 1111
Suécia
The Swedish Information Centre for Rare Diseases: https://www.agrenska.se/Sallsynta-diagnoser/informationscentrum-for-sallsynta-halsotillstand-vid-Agrenska/



































031- 750 92 00
Switzerland
Helpline Info Maladies rares:
http://www.info-maladies-rares.ch/
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)
Switzerland
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
Contact form:
https://www.ukbb.ch/de/konaktformular-rare-diseases.php
https://www.ukbb.ch/de/konaktformular-rare-diseases.php
+41 61 704 10 40 (Monday to Friday, 9 AM - 12 AM and 2 PM - 5 PM)
Taiwan
Taiwan
Foundation for Rare Disorders:
www.tfrd.org.tw/english/
Contact form:
www.tfrd.org.tw/english/contact/index.php