ProRaris successfully collected 459 signatures for its petition regarding the Swiss participation to the European Reference Networks (ERNs). The petition, also supported by the Rare Disease Action Forum (RDAF), asks for Swiss authorities to take urgent actions to enable participation of Swiss healthcare providers and reference centers for rare diseases in the ERNs. Swiss healthcare providers are currently unable to be part of the ERNs due to the prevailing political situation. The petition was submitted to the authorities on 23 August 2017.
The RDAF publishes its newsletter
The newsletter, which is published twice a year, gives an overview of all the Rare Disease Action Forum (RDAF) activities during the past half year to raise awareness about rare diseases in Switzerland and improve patient’s access to diagnosis, treatment and care....