Federal Council: more aid for rare diseases (cross-border guide)

Context

In short

• The Federal Council wants to improve care for people with rare diseases in Switzerland.
• Two intervention phases are planned to strengthen the framework conditions.
• Around 500,000 people in Switzerland suffer from rare diseases.

Key facts

• What: Improvement of care for people with rare diseases.
• When: Intervention in two phases, the first by next spring.
• Where: Throughout Switzerland.
• Who: Federal Council and Federal Department of the Interior.
• Amount: Not specified.

The Federal Council announced on Wednesday morning its intention to strengthen the framework conditions for healthcare against rare diseases. In Switzerland, around 500,000 people suffer from these chronic, debilitating, or potentially fatal conditions. The intervention will be developed in two distinct phases. The first phase provides that by next spring, the government will submit to parliament the bill to create the necessary legal bases to finance specialized care structures. This measure will also allow the Confederation to support national information and advisory activities, develop therapeutic guidelines, and train specialist personnel.

Two-phase intervention

The government has announced that the Federal Department of the Interior will present to the Federal Council a further bill to establish a registry of rare diseases aimed at promoting research. This step will not take place before 2030. The timing, the government explained, will allow the creation of the registry to be coordinated with the ongoing work for the digital transformation of the healthcare sector.

Operational details

The Federal Council's intervention represents a significant step towards improving care for rare disease patients in Switzerland. Rare diseases, defined as those that affect a maximum of five out of every 10,000 people, are about 7,000-8,000 in the world, and 80% of them have a genetic origin. The first phase of the intervention, which involves the creation of legal bases to finance specialized structures, is crucial to ensure adequate assistance to these people.

Practical implications

The second phase, which involves the establishment of a rare disease registry, will be crucial to foster research and further improve care. The timing chosen by the government will make it possible to coordinate these initiatives with the digital transformation of the health sector, ensuring greater efficiency and precision in the care of patients with rare diseases.

Comparison with the current situation

Currently, people with rare diseases face numerous difficulties in obtaining adequate care. The creation of specialized structures and the elaboration of therapeutic guidelines represent a significant step forward towards the resolution of these difficulties. In addition, the collection of data through the rare disease registry will allow us to improve our knowledge of these diseases and develop new therapies.

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Key points

For those suffering from a rare disease or for family members of people with this diagnosis, it is important to stay informed about the next developments of the intervention of the Federal Council. The first phase of the intervention, which involves the creation of legal bases to finance specialized structures, will be essential to ensure adequate assistance. The second phase, which involves the establishment of a rare disease registry, will be crucial to foster research and further improve care.

Step-by-step procedure

1. Follow the official communications of the Federal Council to stay updated on the next developments of the intervention. 2. Consult your primary care physician for information on specialized facilities and treatment guidelines. 3. Check the insurance coverage at the sick fund to understand which rare disease benefits are already covered by the plan.

Tools and resources

For more information and to stay up to date on the next developments, you can consult the official website of the Federal Council and follow the official communications. In addition, you can use the calcolatore stipendio to get information about taxes and social security contributions.

final CTA

To deepen the practical implications of the Federal Council's intervention and to obtain information on taxes and social security contributions, you can use the calcolatore stipendio.

Source: rsi.ch