12 September 2025 – The federal council is looking to improve health care for rare diseases. To reach this goal, the federal council has opened the consultation on a new law, providing a basis for the sustainable financing of the collection, processing and dissemination of health-related information on rare diseases.

A disease is defined as rare if it affects a maximum of 5 in 10'000 individuals and is life-threatening or chronically debilitating. To date, between 7'000 and 8'000 rare diseases have been identified, including cystic fibrosis (CF) and amyotrophic lateral sclerosis (ALS). The consultation process will run until 12 December 2025.

For more information, see here.