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:
.
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.
| Country | Organisation | By email | By phone |
|---|---|---|---|
| Australia | The Association of Genetic Support of Australasia: www.agsa-geneticsupport.org.au/ |    |
+61 2 9211 1462 |
| 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 |
|
|
| Korea | Office of rare
diseases of NIH: helpline.cdc.go.kr |
02)380-2219-21 | |
| Finland | Harvinaiset
Sairaus: www.harvinaiset.fi |
|
|
| France | Maladies Rares
Info Services: www.maladiesraresinfo.org |
|
From
France: 0 810 631 920 (n°azur) From abroad: +33 156 538 136 |
| Italy | Istituto Superiore di Sanità: Centro Nazionale Malattie Rare: www.iss.it/cnmr/ | +39 800 89 69 49 | |
| Norway | Norwegian
Directorate of Health - Rehabilitation and
rare disorders department: www.helsedirektoratet.no/sjelden |
+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 | Instituto de Investigacion de Enfermedades Raras (for patients): iier.isciii.es/er |
|
+ 34 902 18 17 25 |
| Sweden | The Swedish
Information Centre for Rare Diseases: www.socialstyrelsen.se/en/rarediseases |
|
+46-(0)31-786 5590 |
| 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 |
| 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) |
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-
For technical requests regarding connection:
-
Contact the information team to report content to modify:
- Contact the communications team:
- Contact the national Orphanet teams :
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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