Rare diseases: Federal Council wants to sustainably improve healthcare

A disease is considered rare if it affects no more than 5 in 10,000 people and is life-threatening or chronically debilitating. To date, between 7,000 and 8,000 rare diseases have been described worldwide, including cystic fibrosis (CF) and amyotrophic lateral sclerosis (ALS), for example. Half of the rare diseases begin in childhood. It is assumed that around 80 percent of rare diseases are genetic. There is little prospect of a cure for most rare diseases today. Treatment and care focus on symptomatic therapies aimed at alleviating symptoms and improving quality of life.

In order to improve healthcare for people with rare diseases, the Federal Council adopted the National Rare Disease Concept in 2014 and approved an implementation plan with the involvement of the cantons and other key stakeholders. Since then, remarkable progress has been made by various stakeholders in the healthcare system, particularly in connection with the creation of specialized care structures and the improvement of information and guidance for those affected, relatives and specialists. However, implementation is reaching its limits. There is no legally regulated funding basis for the measures that have been initiated.

Parliament has therefore instructed the Federal Council to create a corresponding legal basis. The new law that the Federal Council is now proposing is intended to improve the framework conditions for the implementation of measures to combat rare diseases and create a basis for the sustainable financing of the collection, processing and dissemination of health-related information on rare diseases.

New register for rare diseases

To this end, the federal government is to maintain a register for rare diseases in future. It may also delegate this task to third parties. The register is intended to support research into rare diseases, the evaluation of diagnosis and treatment quality as well as networking between those affected.

Financial support for supply networks and information activities

In future, the federal government will also be able to provide financial support for the designation of care networks for rare diseases. In these care networks, specialists gather expertise for the relevant rare disease. They coordinate care throughout Switzerland, draw up treatment guidelines and organize further training.

The federal government should also be able to financially support certain information and information activities via the Internet or helplines as well as the organization and implementation of training and further education events.

The consultation procedure will last until December 12, 2025.

Source: Federal Office of Public Health FOPH