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:



   Information Centre for Rare Diseases and Orphan Drugs: 00 359 32 57 57 97




 Hrvatska Linija Pomoci za Rijetke Bolesti: 08009966




   Maladies Rares Info Services: 01 56 53 81 36 -

   AFM-Téléthon: 0810 811 088


   Telefono Verde Malattie Rare: 800 89 69 49

   Coordinating Centre Rare Diseases Veneto Region: 00 39 049 82 15 700



   Linha Rara: 707 100 200




  NORO Help Line: 40 360 103200

  Myasthenia Gravis Romania: 0744704399



   SIO-Feder: 902 18 17 25



   Info Maladies Rares: 0 848 314 372


Page created: 30/10/2013
Page last updated: 07/11/2014
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