On September 20 will be held a meeting on "Rare Diseases and Orphan Drugs" at
the Palais du Luxembourg in Paris.
The goal of this meeting sponsored by the French Muscular Dystrophy Association
(Association Francaise contre les Myopathies,AFM), The Cystic Fibrosis
Association (Association Francaise de Lutte contre la Mucovisidose, AFLM), the
Ligue contre le Cancer and AIDS is to define the role that patient groups may
take in the enactment of the European Orphan Drug Law.
That legislation which is being drafted now by the European Union will be based
on the American model, the Orphan Drug Act. The Orphan Drug Act is built upon
incentives that are aimed at luring pharmaceutical companies into developping
drugs that should otherwise have little commercial value.
If you believe in the urgency of enacting an Orphan Drug Law in Europe, a
representative of your association may want to attend the September 20 meeting.
Please contact Dr. Marc BOUILLET at the Association Francaise contre les
Myopathies (AFM) :
phone : 33-1-42-76-58-58
fax : 33-1-42-76-58-87
Please contact him early as attendance will be limited.
If you cannot attend this meeting but wish to help in this effort, please advise
that you would like to be kept informed about the proceedings of the meeting.