The National Rare Disease Policy is 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.
The FOPH was charged with drafting a policy. In 2011 and 2012 it worked with the parties affected to draw up a general overview of the challenges associated with the issue of rare diseases. Then, in 2013 and 2014, four workshops were held for all those involved. The first workshop produced an in-depth analysis of the issues. To better understand the specific problems related to rare diseases and pave the way for corresponding measures, the FOPH conducted a survey of people affected, the findings of which were also incorporated in the analysis. At the second and third workshops goals were set down. At the fourth workshop, 19 concrete measures were defined.
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. While progress had been made on a range of actions until that point, it was too early to talk of measures actually having been implemented. In particular, designating specialised care delivery structures turned out to be more complex than expected. Since many measures contained in the policy depend on these designations, they could not be implemented according to plan.
Since the second half of 2017 the newly established national rare diseases coordination office (kosek) has taken the lead in designating and publishing these structures on the basis of principles that have now been successfully elaborated.
In fulfilment of the Federal Council’s mandate, the FOPH is overseeing measures under the National Rare Disease Policy whose implementation is not yet complete, and will continue to do so until the end of 2021.
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
Last modification 19.02.2020