The national rare disease policy approved in 2014 was the Swiss Federal Council’s response to postulate 10.4055 on national strategy to improve the health situation of people with rare diseases and postulate 11.4025 on the health hardship commission.
No new strategy, but a national rare disease policy
On 15 October 2014 the Federal Council passed the National Rare Disease Policy as part of the Health 2020 healthcare priorities, and commissioned the Federal Department of Home Affairs (FDHA) to draw up an implementation schedule. Within this framework the Federal Office of Public Health (FOPH) and the parties involved formulated a plan to implement the 19 measures of the National Rare Disease Policy.
Implementation of National Rare Disease Policy extended
The original plan was to complete implementation by 31 December 2017. However, the definition of the process for designating reference centres and care delivery structures was delayed by two years. Since many measures contained in the policy depend on these designations, they could not be implemented at the end of 2017 according to plan. Since the second half of 2017 the newly established national rare diseases coordination office (kosek) has taken the lead in designating these structures and publishing a list on the basis of principles that have now been successfully elaborated.
In fulfilment of the Federal Council’s mandate, the FOPH is overseeing measures whose implementation is not yet complete until the end of 2022.
The goals of the National Rare Disease Policy
- Access to diagnosis and payment for diagnosis
- Access to therapies and payment for therapies
- Support for patients and their resources
- Swiss involvement in (international) research
- Socio-professional and administrative support
- Clinical documentation and training
- Establishing the National Rare Disease Policy on a sustained basis
- New: International networking
Legal basis and financial framework for securing rare disease care
While implementation of the National Rare Disease Policy was under way, a parliamentary mandate was issued to look into the matter more closely. In response to this, in fulfilment of postulate 18.3040 of the National Council's Social Security and Health Committee dated 23 February 2018 and postulates 15.4181 and 10.4055, on 17 February 2021 the Federal Council published a report on the legal basis and financial framework for securing rare disease care.
Last modification 28.10.2021