The Rare Disease Action Forum has organized a multi-stakeholder meeting on the topic of “The revision of the Swiss invalidity insurance (IV) and its impact on patients with rare diseases”, held today in Bern at the Kursaal.

Swiss parliamentarians, together with delegates from patient organizations, Healthcare Professionals and industry, are going to discuss how the revision of the IV can contribute to improvements for patients with rare diseases in Switzerland. In Switzerland, approximately 600.00 people suffer from rare diseases; 75% of these patients are children, and 80% of the diseases are of genetic origin. Those people with rare diseases and their families are mostly impacted by the revision of the IV. In particular, the envisaged changes to the list of congenital defects will have great impact on patients with rare diseases.

The multi-stakeholder workshop aims at generating impetus to current questions regarding the IV-revision. The focus thereby will be on questions regarding improved access to diagnosis, treatment and care but also on questions regarding societal solidarity and social responsibility.