The Rare Diseases Platform Italian Switzerland was founded to be able to contribute when putting the measures of the national concept into effect. Its activities are structured in a manner which provides for a successful cooperation with the responsible persons of the national concept and other involved actors on the national level. In the medium term, the platform aims to reach three goals:

  1. With regards to the national concept, a platform (following the definition by the SAMW)
    shall be founded in the Italian part of Switzerland with the following goals:

    • To become active for people with rare diseases who live in the Italian part of Switzerland, to facilitate access to therapies and by supporting them and their families with dealing with all challenges;
    • To define a point of contact in the Italian part of Switzerland based on existing offers, which aims to improve the access to therapies and to social support functions;
    • To improve the exchange of information and the cooperation between affected persons, their families and healthcare professionals.
  2. Regarding the national concept, the platform aims to strengthen the competences and skills present in the Italian part of Switzerland (clinical as well as basic research). For specific rare diseases, managed care networks shall be established with specialized healthcare providers and reference centers pursuing the following goal (following the definition by the SAMW, 2016):

    • strengthen the clinical competences in the area of rare diseases;
    • strengthen clinical and basic research in the area of rare diseases;
    • promote education and continued education on all levels;
    • better connect the existing and future competences in the Italian part of Switzerland.
  3. The platform sensitizes for the issue at hand and the competences regarding rare diseases in the southern as well as the northern parts of Switzerland. Specifically, the goals are:

    • Sensitize the Federal Office of Public Health (FOPH), the Interest Group Rare Diseases as well as the public for the competences and the needs of healthcare providers and the patients in the Italian part of Switzerland.
    • Sensitize in the Italian part of Switzerland for the issue of rare diseases and strengthen the competences.
    • Create incentives so that the actors can be involved in the discussion regarding their competences and their role thereby furthering the awareness and the knowledge for the issue in the Italian part of Switzerland.

Proposition d’application de la mesure 1 «Un processus qui établit les centres de référence est défini», ASSM, 2016 (PDF)