ProRaris, the Swiss rare diseases patient alliance, submitted its petition regarding Swiss participation in European Reference Networks (ERNs)

28 Aug, 2017

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.

Joint statement on the KVV/OAMal and KLV/OPAS revision

The RDAF co-signed a joint statement with other stakeholders on the revision of the Health Insurance Ordinance (KVV/OAMal) and Health Benefits Ordinance (KLV/OPAS). The statement highlights the potential negative impacts of the revision, including the following: -...

The Rare Disease Action Forum (RDAF) advocates for a fair and rapid access to high-quality treatment for patients with rare diseases in Switzerland.

In line with this concern, the RDAF would like to draw attention to the fact that the planned revision of the Health Insurance Ordinance (KVV), contrary to its stated objective, threatens patients’ access to treatment. Read our media release here.