Journée internationale des maladies rares 2011
Message of Christel Nourissier, General Secretary - EURORDIS
Dear friends of the EPAC and Europlan,
The first conference organised by ProRaris, the new Swiss Alliance, at the occasion of RDDay, has been an overwhelming success.
On Feb 19, more than 400 participants met in Bern - patients, about 35 associations, health professionals, scientists and politicians -, to learn, share and discuss in German and French (simultaneously translated), the rare diseases public health issue. The event was supported by the main University Hospitals (Geneva, Lausanne, Zurich and Bern), children hospitals of Zurich and Basel, Orphanet Switzerland, the BNP Paribas foundation, Gebert Rüf Stiftung and "Association Enfance et Maladies Orphelines".
The main theme, inequal access to care, was illustrated by several patient testimonies: diagnosis quest, isolation, inequal access to treatment. A recent decision from the federal Court of Justice has resulted in the refusal of the reimbursement of Myozyme by Swiss insurances for all adult patients suffering from Pompe disease. As stated by many participants, death penalty does not exist in Switzerland.
Ruth Humbel, member of the Health Commission in the Parliament, closed the day. She is proposing a vote for a National Plan for Rare Diseases. I presented the state of the art and ongoing work at EU level.
The role of patient associations was presented: they are extremely active in Switzerland. As stated by Esther Neiditsch, Président of ProRaris, and Anne-Françoise Auberson, vice-president, from now ProRaris will be a strong and reliable partner for the establishment of future health, research and social policies for people living with rare diseases in Switzerland.
Best wishes to all of you for all the events you are supporting this week and next week! Christel