In the coming weeks, the Parliament will examine a proposal for a Programme of Community Action on Rare Diseases. For the millions of families affected by rare disorders throughout Europe, this Programme of Action represents a ray of hope.
Families affected by rare diseases lack information and means to end their isolation.
Persons suffering from rare diseases have been the orphans of the healthcare system for too long. They need information on centers of excellence where they may get accurate diagnosis and the best possible care, on current clinical trials, on the latest advances in treatment, on local support networks and organizations, etc. They need to access this information in their own language. These persons also need better research based on more accurate epidemiological knowledge. In addition, they must be able to rely on stronger and more effective patient organizations to provide them with information, material and psychological support, as well as social and reproductive counselling.