- For information on a rare disease
- For a research collaboration or a study
- For a personal query
- To register an activity
- For other purposes
- To locate our office in Paris
- Contact us by phone
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'. You can also do a search by clicking on 'Services to', located in the menu on the left of the home page. Then click on 'Search by disease' and write the name of the disease.
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, leave us a message in our message box:
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, please submit your query () explaining the purpose for which you need this data extraction.
For a personal query
Orphanet cannot answer personal queries. You should contact a dedicated service.
| Country | Patients Organisation | Web Site |
|---|---|---|
| Bulgaria | ICRDOD (Information Center for Rare Diseases and Orphan Drugs)  |
www.raredis.org |
| Canada | CORD (Canadian Organization for Rare Disorders) |
www.raredisorders.ca |
| Denmark | Center for Små Handicapgrupper |
www.csh.dk |
| Finland | Harvinaiset Sairaus  |
www.harvinaiset.fi |
| France | Maladies Rares Info Services |
www.maladiesraresinfo.org |
| France | Fédération des Maladies Orphelines (FMO) |
www.maladies-orphelines.fr |
| Germany | ACHSE (Allianz Chronischer Seltener Erkrankungen) |
www.achse-online.de |
| Italy | Istituto Superiore di Sanità: Centro Nazionale Malattie Rare | www.iss.it/cnmr/ |
| Norway | Norwegian Directorate of Health Rehabilitation and rare disorders department |
http://www.helsedirektoratet.no/sjelden http://www.rarelink.no |
| Spain | Instituto de Investigacion de Enfermedades Raras (for patients) |
iier.isciii.es/er |
| Sweden | The Swedish Information Centre for Rare Diseases |
www.socialstyrelsen.se/en/rarediseases |
| UK | Contact-a-family |
www.cafamily.org.uk |
| USA | NORD (National Organization for Rare Disorders) |
www.rarediseases.org |
| Country | Organisation | Helplines |
|---|---|---|
| Canada | CORD (Canadian Organization for Rare Diseases) | +1-877 302 7273 |
| France | Maladies Rares Info Services | From France : 0 810 631 920 (n°azur) From foreign countries : +33 156 538 136 |
| Norway | Norwegian Directorate of Health Rehabilitation and rare disorders department |
Free helpline: +47 800 41710 |
| Spain | FEDER | 902 18 17 25 |
| United Kingdom | Contact-a-family | 0 808 808 3555 |
| United States of America | NORD (National Organization of Rares Disorders) | +1 (800) 999 6673 (voicemail only) |
To register an activity
Please complete the short questionnaire below ! Register / Update your activity
For other purposes
contact the webmaster : (
) for technical requests regarding connectioncontact the information team : (
) to alert us to mistakes, omissions, modifications or corrections- contact the Orphanet national teams :
To locate our office in Paris
We are located at the following address :
Postal address :
INSERM SC11
102, rue Didot
75014 Paris, France
To visit us :
INSERM SC11
Hopital Broussais
96, rue Didot
Plateforme Maladies Rares
Secteur jaune
Batiment Gaudart d'Allaines porte 5
Rez-de-chaussée
75014 Paris, France
To locate our office in Paris, please consult the map.
Agrandir le plan
Contact us by phone :
+33 (0)1 56 53 81 37
We are a small team and we can therefore only reply to a limited number of messages per day. Please accept our apologies for any inconvenience.
