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