Knowledge on rare diseases and orphan drugs

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For information on a rare disease

Write the name of the disease (or only part of the name) in the box provided on the front page, then click on 'search'.

We do not answer questions relating to information on diseases, as all available information at our disposal is freely accessible on the web site.

If you cannot find the information you are searching for, please consult the alphabetical list of diseases, or try another approximate spelling. If you are still unable to find the information you require, please send us a message by email: contact.orphanet@inserm.fr

For a research collaboration or a study

If you would like to obtain a substantial amount of information from the database for research work, a report or personal use: www.orphadata.com.

For a personal query

Orphanet cannot answer personal queries. You should contact a dedicated service.

Country
Organisation
By email
By phone
Australia
Genetic Alliance Australia: https://www.geneticalliance.org.au/
info@geneticalliance.org.au
+61 2 9295 8359
Australia
Rare Voices Australia: https://rarevoices.org.au/
Contact form
+61 (0)499 549 629
Austria
Forum Seltene Krankheiten
//www.forum-sk.at/
info@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/
info@radiorg.be
+32 (0)478 72 77 03
Bulgaria
ICRDOD (Information Center for Rare Diseases and Orphan Drugs): www.raredis.org
info@raredis.org
+359 (0)32 57 57 97
Canada
CORD (Canadian Organization for Rare Disorders): www.raredisorders.ca
info@raredisorder.ca
+1-877 302 7273 (English speakers)
Canada
RQMO (Regroupement Québécois des Maladies Orphelines - Portail Info Maladies Rares Québec):
www.rqmo.org
info@rgmo.org
+1-819-943-2854 (French speakers)
Germany
ACHSE (Allianz Chronischer Seltener Erkrankungen): www.achse-online.de
beratung@achse-online.de
0049 (0)30 3300708-22/27
Korea
Korea Disease Control and Prevention Agency:
//helpline.nih.go.kr/cdchelp/index.gst
raredisease@korea.kr
043 719- 8771
Finland
Harvinaiset-verkosto: www.harvinaiset.fi/english
harvinaiset@harvinaiset.fi
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
National Rare Diseases Office Information Services:
www.hse.ie/eng/services/list/5/rarediseases/whatwedo.html
rarediseases@mater.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
Luxembourg
ALAN - Maladies Rares Luxembourg
https://alan.lu/fr/contactez-nous/
infolineMR@alan.lu
(+352) 2021-2022
Netherlands
Erfocentrum (//www.erfelijkheid.nl)
erfoljin@erfocentrum.nl
033-3032110
Norway
NKSD – National Advisory Unit on Rare Disorders
NKSD - Nasjonal kompetansetjeneste for sjeldne diagnoser)
www.sjeldne-diagnoser.no/
sjeldne-diagnoser@ous-hf.no
+47 800 41710
Portugal
Linha Rara: https://www.linharara.eu/
linharara@rarissimas.pt
300 505 700
Romania
Centrul de informare pentru Boli Genetice Rare: www.apwromania.ro/index.php?act=cibgr
doricado@yahoo.com
080 080 1111
Spain
Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER)
consulta@ciberer.es
Spain
Servicio de Información y Orientación de FEDER
sio@enfermedades-raras.org
+34 918 221 725
Sweden
The Swedish Information Centre for Rare Diseases: www.agrenska.se/om-oss/verksamheter/nationellt/kunskapsstod/informationscentrum-for-sallsynta-halsotillstand/
sallsyntahalsotillstand@agrenska.se
031- 750 92 00
Switzerland
Helpline Info Maladies rares:
//www.info-maladies-rares.ch/
contact@infomaladiesrares.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
selten@kispi.uzh.ch
+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
Contact form
+41 61 704 10 40 (Monday to Friday, 9 AM - 12 AM and 2 PM - 5 PM)
Taiwan
Taiwan Foundation for Rare Disorders:
www.tfrd2.org.tw/tfrd_eng/
Contact form
UK
Contact-a-family: www.cafamily.org.uk
info@cafamily.org.uk
0 808 808 3555
UK
CLIMB (Metabolic Diseases, UK)
fam.svcs@climb.org.uk
(+44) (0)800 652 3181 (Open 10am - 4pm GMT)
UK
Helpline Gene people
helpline@genepeople.org
0800 9878985
USA
NORD (National Organization for Rare Disorders): www.rarediseases.org
orphan@rarediseases.org
+1 (800) 999 6673
USA
Genetic and Rare Diseases Information Center (GARD):
www.rarediseases.info.nih.gov/GARD/Default.aspx
Contact form
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)

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For other purposes

Orphanet Österreich
Orphanet Belgium
Orphanet Bŭlgariya
Orphanet Česká republika
Orphanet Eesti
Orphanet Suomi
Orphanet France
Orphanet Georgia
Orphanet Deutschland
Orphanet Ireland
Orphanet Israël
Orphanet Italia
Orphanet Japan
Orphanet Latvija
Orphanet Lietuva
Orphanet Luxembourg
Orphanet Nederlands
Orphanet Norge
Orphanet Polska
Orphanet Qazaqstan Respwblïkasi
Orphanet Portugal
Orphanet România
Orphanet Srbija
Orphanet Slovenija
Orphanet España
Orphanet Sverige
Orphanet Switzerland
Orphanet United Kingdom
Orphanet North Macedonia
Orphanet Turkiye

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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