The main theme, inequal access to health 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.
Christel Nourissier from EURORDIS
presented the state of the art and ongoing work on European 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.