Rare diseases: Federal Council aims for more effective treatments (cross-border guide)

Context

In a nutshell

• The Federal Council wants to improve healthcare for people with rare diseases.
• Specialized assistance facilities and information activities will be created.
• The project will be carried out in two stages, with the first by spring 2027.

Key facts

• What: Improving healthcare for rare diseases.
• When: Decision of 2 September 2026.
• Where: Switzerland.
• Who: Federal Council.
• Amount: Not specified.

The Federal Council has decided to improve the framework conditions for healthcare for people with rare diseases. At its meeting on 2 September 2026, it decided to proceed in two stages. In a first stage, it wants to create the legal bases to allow the Confederation to finance specialized assistance facilities as well as information and advisory activities. In a second stage, the Federal Department of the Interior (DFI) will have to submit to the Federal Council a draft law aimed at establishing a register of rare diseases.

To improve healthcare for people with a rare disease, the Federal Council adopted the National Rare Disease Plan in 2014. In agreement with the Cantons and other relevant actors, it had approved the relevant implementation plan. However, implementation presents some critical issues, as there is still no clear legal basis for the financing of the planned measures.

Financial aid for networks

Operational details

Practical Implications

The decisions of the Federal Council will have a significant impact on healthcare in Switzerland. The creation of specialized care facilities and the introduction of a national registry for rare diseases represent important steps towards improving the quality of life for people affected by rare diseases.

Specialized care networks will allow for better coordination of healthcare throughout Switzerland, ensuring that patients receive the care they need. Additionally, the development of therapeutic guidelines and the training of specialist staff will contribute to improving the skills of healthcare professionals.

The creation of a national registry for rare diseases will be a crucial step in improving data bases and promoting research. This registry will allow for the collection of more accurate information on rare diseases, facilitating the development of new therapies and treatments.

Coordination with DigiSanté

Coordination with the DigiSanté program is essential to avoid redundancies and reduce the costs associated with the creation of the registry. This synergistic approach will allow for the best use of available resources and will lighten the administrative burden on healthcare professionals.

Impact on Research

The introduction of a national registry for rare diseases will have a positive impact on research. The data collected in the registry can be used to better study rare diseases and develop new therapies. This will contribute to improving the prospects of recovery for people affected by rare diseases.

Recommended tools

For an updated estimate, use the net salary calculator and the CHF-EUR exchange comparator.

Key points

Concrete actions

For those interested in these news, it is important to closely follow the legislative work of the Federal Council. The first stage of the project will be completed by spring 2027, with the introduction of the legal bases for the financing of specialized assistance facilities.

In addition, you can participate in public consultations and contribute to the decisions of the Federal Council. This is an important way to ensure that the needs of people with rare diseases are taken into account.

For more information, you can consult the Federal Council website and follow updates on legislative decisions. It is important to remain informed and actively participate in the decision-making process to ensure that the measures taken are effective and respond to the needs of people with rare diseases.

Scopri di più sulla LAMal

Calcola il tuo stipendio netto

Confronta i premi delle casse malati

Source: admin.ch