Switzerland to boost funding and establish a national register for rare diseases
核心洞察
Switzerland's government plans to establish a legal framework providing financial support for specialised care structures and information/advisory services for rare diseases.
The Federal Department of Home Affairs (搜索) (EDI) will submit a draft bill for a national rare disease register in early 2030 at the earliest.
Over half a million people in Switzerland are estimated to live with a rare disease, with between 7,000 and 8,000 rare diseases described worldwide.
The Swiss government has announced plans to boost funding for people living with rare diseases, beginning with the establishment of a legal framework to provide financial support for specialised care structures and for information and advisory services. The Federal Department of Home Affairs (搜索) (EDI) received the relevant mandate at a government meeting on Wednesday, as announced the same day.
In a second step, the EDI will submit a draft bill for a national register of rare diseases in early 2030 at the earliest. The government now intends to pursue two separate laws rather than a single one, because the work on the national register must be coordinated with the digital transformation of the healthcare system — in particular with the Digisanté programme.
A two-step legislative approach
The decision follows a mandate issued by Parliament in 2022, which instructed the government to create a legal framework to secure funding for measures set out in a national strategy on rare diseases adopted in 2014. A year ago, the government submitted a corresponding bill for consultation, at which time it announced its intention to provide financial support for care networks in the future and to plan a national register.
Feedback from the consultation process showed that coordination with the digital transformation of the healthcare system is necessary to capitalise on synergies, avoid duplication in the design of digital processes and infrastructure, and reduce associated costs. The nationwide register for rare diseases is intended to improve the database for such diseases and facilitate research.
The burden of rare disease in Switzerland
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.
Between 7,000 and 8,000 rare diseases have been described worldwide to date, according to the government's press release. These include, for example, cystic fibrosis (搜索) and Pompe disease (搜索). Half of all rare diseases manifest in childhood, and it is estimated that around 80% of rare diseases have a genetic cause.
For most rare diseases, there is currently no cure. Treatment and care focus on therapies aimed at alleviating symptoms and improving quality of life.