Swiss Federal Council outlines two-stage plan for rare disease care

The Swiss Federal Council has decided to split the legislative approach to improving care for people with rare diseases into two distinct stages. The first priority is establishing a financial foundation to support specialized care networks, helplines, and professional training, with a draft proposal expected by spring 2027.

In contrast, the creation of a national registry for rare diseases has been delayed. The Federal Department of Home Affairs is not expected to present a proposal for this registry until early 2030. This delay is intended to ensure alignment with the DigiSanté program for digital transformation in healthcare, thereby avoiding administrative duplication and unnecessary costs.

Rare diseases, or orphan diseases, affect approximately five out of every 10,000 people. About 80 percent of these conditions are genetic, many of which are chronic, life-threatening, or begin in childhood. While biotechnology companies like Vertex Pharmaceuticals are working on innovative therapies to address underlying causes rather than just symptoms, many patients currently rely on treatments that only manage symptoms.