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Orphanet is present on Twitter and Facebook. Follow us to keep up to date with Orphanet's latest activities and developments.

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:
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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.org.

For a personal query

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

Helplines for personal queries
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)
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) 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: http://www.linharara.pt/index.php 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)
Servicio de Información y Orientación de FEDER +34 918 221 725
Sweden 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)
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/
Contact form:
www.tfrd.org.tw/english/contact/index.php
UK Contact-a-family : www.cafamily.org.uk                     0 808 808 3555
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
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 an activity

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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 Armenia Orphanet Germany Orphanet Poland
Orphanet Australia Orphanet Greece Orphanet Portugal
Orphanet Austria Orphanet Hungria Orphanet Quebec/Canada
Orphanet Belgium Orphanet Ireland Orphanet Romania
Orphanet Bulgaria Orphanet Israel Orphanet Serbia
Orphanet Croatia Orphanet Italia Orphanet Slovakia
Orphanet Cyprus Orphanet Latvia Orphanet Slovenia
Orphanet Czech Republic Orphanet Lebanon Orphanet Spain
Orphanet Denmark Orphanet Lithuania Orphanet Sweden
Orphanet Estonia Orphanet Luxembourg Orphanet Switzerland
Orphanet Finland Orphanet Morocco Orphanet Turkey
Orphanet France Orphanet Netherlands Orphanet United Kingdom
Orphanet Georgia Orphanet Norway

Contact the coordinating team

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

Phone: +33 (0)1.56.53.81.37
Fax : +33 (0)1.56.53.81.38

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


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