- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
7 ways to find information on your rare disease
- Search for a EURORDIS member patient organisation that represents your disease
EURORDIS has 826 member organisations from 70 countries.
Start typing a rare disease and select a disease from the dropdown list that then displays
- Search Orphanet
Orphanet
is a directory of rare diseases, orphan medicines, patient organisations, professionals, expert centres, diagnostic tests, research projects, clinical trials, registries and biobanks.- Find the rare disease national alliance in your country
National alliances federate patient organisations from a wide range of diseases within a particular country.
Choose your country
Czech Republic
Rare diseases Czech Republic (Česká asociace pro vzácná onemocnění (ČAVO))
http://vzacna-onemocneni.cz
Rare diseases Czech Republic (Česká asociace pro vzácná onemocnění (ČAVO))
http://vzacna-onemocneni.cz
Germany
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
www.achse-online.de
Allianz Chronischer Seltener Erkrankungen (ACHSE)
German National Alliance for Chronic Rare Diseases
www.achse-online.de
Italy
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
www.uniamo.org
Federazione Italiana Malattie Rare (UNIAMO)
Italian Federation for Rare Diseases
www.uniamo.org
Russian Federation
National Association of Patients with Rare Diseases '"GENETICA"
www.nacgenetic.ru
National Association of Patients with Rare Diseases '"GENETICA"
www.nacgenetic.ru
The former Yugoslav Republic of Macedonia
National Alliance for Rare Disease of R. Macedonia
retkibolesti@gmail.com
National Alliance for Rare Disease of R. Macedonia
retkibolesti@gmail.com
Ukraine
Non-governmental Organization "Rare Diseases of Ukraine"
https://www.facebook.com/orphandisua
Non-governmental Organization "Rare Diseases of Ukraine"
https://www.facebook.com/orphandisua
United Kingdom of Great Britain and Northern Ireland
Genetic Alliance UK
www.geneticalliance.org.uk
www.geneticalliance.org.uk
contactus@geneticalliance.org.uk
Rare Diseases UK
Rare Diseases UK
Rare Disease UK is a campaign run by Genetic Alliance UK
www.raredisease.org.uk
www.raredisease.org.uk
- Find a helpline in your country
Rare disease helplines
offer advice to a patient or family member on how to find the information they need to manage living with a rare disease.- Find information related to your disease on eurordis.org
- Find your rare disease community on RareConnect
RareConnect
is a safe, easy to use platform where rare disease patients, families and patient organisations can develop online communities and conversations across continents and languages. Find your rare disease online community.- Read the stories of other people living with a rare disease on the Rare Disease Day website
Search by disease and country
among the hundreds of stories shared by people living with a rare disease and family members from around the world.
Find out the latest news from the rare disease community! We comply with the HONcode standard for health trustworthy information
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This website received funding under an operating grant from the European Union’s Health Programme (2014-2020)
The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative