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.

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    RDAF hosts Swiss Rare Disease Summit on 26 November 2024

    The Rare Disease Action Forum (RDAF) will host the Swiss Rare Disease Summit on 26 November 2024 (9.30 – 17.30 CEST). The event will take place in Bern, with the additional option of virtual attendance. The Swiss Rare Disease Summit endeavors to forge a collective...