It’s estimated that over half a million people in Switzerland live with a rare disease.
Keystone / Gaetan Bally
The Swiss government intends to provide more support to people with rare diseases through two new laws.
As a first step, the government plans to establish the legal framework enabling it to provide financial support for specialised care structures and for information and advisory services.
In a second step, the Federal Department of Home Affairs (EDI) will submit a draft bill for a national register of rare diseases in early 2030 at the earliest. The government gave the EDI the relevant mandate at its meeting on Wednesday, as it announced on the same day.
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A disease is considered rare if it affects no more than 5 in 10,000 people and is life-threatening or chronically debilitating. According to the government, estimates suggest that over half a million people in Switzerland live with a rare disease.
One law becomes two
Back in 2022, Parliament instructed the government to create a legal framework to secure funding for the measures set out in a national strategy on rare diseases that had already been adopted in 2014.
A year ago, the government submitted a corresponding bill for consultation. Even then, the government announced that it wished to be able to provide financial support for care networks in future. A national register was also planned.
The government now wants two laws rather than just one because, according to it, the work on the national register needs to be coordinated with the digital transformation of the healthcare system. In particular, the work is to be coordinated with the Digisanté programme.
Feedback from the consultation process has shown that this coordination is necessary in order to capitalise on synergies, avoid duplication in the design of digital processes and infrastructure, and reduce the associated costs.
The nationwide register for rare diseases is intended to improve the database for such diseases and facilitate research.
Up to 8,000 diseases
According to the government’s press release, between 7,000 and 8,000 rare diseases have been described worldwide to date. These include, for example, cystic fibrosis and Pompe disease. Half of all rare diseases manifest in childhood. It is estimated that around 80% of rare diseases have a genetic cause.
It goes on to state that, for most rare diseases, there is currently no cure. Treatment and care focus on therapies aimed at alleviating symptoms and improving quality of life.
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Translated from German, reviewed by an English Department journalist.
