- 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
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
To find out whether or not there is a Compassionate Use Programme for your disease, you can start by asking your doctor or your patient organisation. However, not all doctors are aware that a Compassionate Use Programme is authorised (as the product is not yet approved, no communication can be made by the company that the programme is running. This would be considered as illegal promotion).
The European Network of Rare Diseases Help Lines is also trained to respond to any question you may have in this respect.
Not all EU Member States have a national help line for rare diseases, however for the following Member States you can contact:
Bulgaria
Information Centre for Rare Diseases and Orphan Drugs: 00 359 32 57 57 97
Croatia
Hrvatska Linija Pomoci za Rijetke Bolesti: 08009966
France
Maladies Rares Info Services: 01 56 53 81 36 - www.maladiesraresinfo.org
AFM-Téléthon: 0810 811 088
Italy
Telefono Verde Malattie Rare: 800 89 69 49
Coordinating Centre Rare Diseases Veneto Region: 00 39 049 82 15 700
Portugal
Linha Rara: 707 100 200
Romania
NORO Help Line: 40 360 103200
Myasthenia Gravis Romania: 0744704399
Spain
SIO-Feder: 902 18 17 25
Switzerland
Info Maladies Rares: 0 848 314 372
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
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, Rare Diseases International is a EURORDIS initiative
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