Useful services: where you can learn more about Compassionate Use Programmes.


Links to national authority websites

Public information on compassionate use programmes will be available soon.  See below for who to contact in your national authority


The European Register of Clinical Trials (EudraCT-R) and other online sources

EudraCT Register is the database of all clinical trials authorised in Europe, and has information on Compassionate Use Programmes


The website of the National Institutes of Health in the USA

The NIH database of clinical trials provides more information on Compassionate Use Programmes


The website of the European Medicines Agency (EMA)

The European Medicines Agency plays a role in defining who can benefit from compassionate use


Links to Help Lines: How can I find a Compassionate Use Programme for my disease - can anyone help?

The European Network of Rare Diseases Help Lines can assist you in finding the information you need


Compassionate Use Glossary

Terms you may need to understand compassionate use better

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect 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.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day 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 initiativeEuropean Conference on Rare Diseases