At its meeting of 2 September 2026, the Federal Council decided to improve the framework conditions for the healthcare of the estimated more than half a million people living with a rare disease in Switzerland, proceeding in two steps. Building on the National Rare Disease Concept adopted in 2014, the implementation of which has reached its limits in the absence of a statutory basis for financing, the Federal Council took note of the consultation results and resolved to divide the legislative work into two parts, thereby implementing two parliamentary motions.

As a first step, by spring 2027 at the latest, the Federal Council will submit to Parliament a bill establishing a statutory basis for federal financial assistance for the designation and review of specialised care structures. Within these care networks, specialists pool expertise for particular groups of rare diseases, coordinate care across Switzerland, develop treatment guidelines, and organise continuing professional education. Financial support is also envisaged for information and advisory services provided via the internet or helplines.

As a second step, the Federal Department of Home Affairs (FDHA) will submit a bill for a national rare diseases register, at the earliest in early 2030.The register is to be aligned with the DigiSanté programme in order to avoid duplication and minimise administrative burden.

For more information, see here.