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Country
Organisation
By email
By phone
Australia
Genetic Alliance Australia:
https://www.geneticalliance.org.au/

Rare Voices Australia:
https://rarevoices.org.au/



Contact form
+61 2 9295 8359

+61 (0)499 549 629
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.
https://www.radiorg.be/nl/contact/
+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
+1-819-943-2854 (French speakers)
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
contact form
From France:
Numéro vert 0800 40 40 43
From abroad:
+33 156 538 136
Ireland
Organization: National Rare Diseases Office Information Services:
www.rarediseases.ie
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)
Contact form
(+54) (0261) 4291987
o 0800 333 3353
de Lunes a Viernes de 08:00 hs a 12:30 hs
Netherlands
Erfocentrum (http://www.erfelijkheid.nl)
033-3032110
Norway
NKSD – National Advisory Unit on Rare Disorders
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
+47 800 41710
Portugal
Linha Rara: https://www.linharara.eu/
300 505 700
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: 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/
+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
Contact form:
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
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
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)

To register/update an activity and for other purposes

  • For technical requests regarding connection:

  • Contact the information team to report content to modify:

  • Contact the communications team:
  • Contact the national Orphanet teams :
Orphanet Austria Orphanet Belgium Orphanet Bulgaria
Orphanet Czech Republic Orphanet Estonia Orphanet Finland
Orphanet France Orphanet Georgia Orphanet Germany
Orphanet Ireland Orphanet Israel Orphanet Italia
Orphanet Japan Orphanet Latvia Orphanet Lithuania
Orphanet Luxembourg Orphanet Netherlands Orphanet Norway
Orphanet Poland Orphanet Portugal Orphanet Qazaqstan Respublikasy
Orphanet Romania Orphanet Serbia Orphanet Slovenia
Orphanet Spain Orphanet Sweden Orphanet Switzerland
Orphanet United Kingdom Orphanet North Macedonia Orphanet Turkey

Contact the coordinating team

Orphanet / INSERM US14
Rare Disease Platform
96, rue Didot
75014 Paris, France

Phone: +33 (0)1.56.53.81.37

To locate our office in Paris, please consult the map.


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