Knowledge on rare diseases and orphan drugs
COVID-19 & Rare diseases
Rare Diseases Resources for Refugees/Displaced Persons
Country
Organisation
By email
By phone
Belgium
RaDiOrg is the umbrella organisation for patient organisations concerning rare diseases.
https://www.radiorg.be/nl/
https://www.radiorg.be/nl/
+32 (0)478 72 77 03
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
www.rqmo.org
+1-819-943-2854 (French speakers)
Germany
ACHSE (Allianz Chronischer Seltener Erkrankungen): www.achse-online.de
0049 (0)30 3300708-22/27
Korea
Korea Disease Control and Prevention Agency:
//helpline.nih.go.kr/cdchelp/index.gst
//helpline.nih.go.kr/cdchelp/index.gst
043 719- 8771
France
Maladies Rares Info Services:
www.maladiesraresinfo.org
www.maladiesraresinfo.org
From France: Numéro vert 0800 40 40 43 From abroad: +33 156 538 136
Ireland
National Rare Diseases Office Information Services:
www.hse.ie/eng/services/list/5/rarediseases/whatwedo.html
www.hse.ie/eng/services/list/5/rarediseases/whatwedo.html
By phone: +353 1 854 5065 +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
Norway
NKSD – National Advisory Unit on Rare Disorders
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
+47 800 41710
Romania
Centrul de informare pentru Boli Genetice Rare: www.apwromania.ro/index.php?act=cibgr
080 080 1111
Sweden
The Swedish Information Centre for Rare Diseases: www.agrenska.se/om-oss/verksamheter/nationellt/kunskapsstod/informationscentrum-for-sallsynta-halsotillstand/
031- 750 92 00
Switzerland
Helpline Info Maladies rares:
//www.info-maladies-rares.ch/
//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:
//www.kispi.uzh.ch/helpline-selten
//www.kispi.uzh.ch/helpline-selten
+41 (0)44 249 65 65 (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
+41 61 704 10 40 (Monday to Friday, 9 AM - 12 AM and 2 PM - 5 PM)
USA
Genetic and Rare Diseases Information Center (GARD):
www.rarediseases.info.nih.gov/GARD/Default.aspx
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)