• VIS | Vereinigung Ichthyose Schweiz
  • AIS | Association Ichtyose Suisse
  • USI | Unione Svizzera Ittiosi
Rare Disease Day in Berne 2011

The first conference organised by ProRaris, the new Swiss Alliance, at the occasion of RDDay, has been an overwhelming success.

On Feb 19, about 450 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 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
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.

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