AELMHU will collaborate with FEDER in the development of the meetings that will be held during the month of November to establish the national objectives of the Rare2030 Projecta study led by the European Rare Disease Alliance (EURORDIS) that brings together patients, professionals and opinion leaders to propose policy recommendations for a better future for rare diseases. It is a two-year project that will end with a presentation to the European Parliament at the end of 2020 with recommendations on rare disease policies for the next decade.
The Directorate General for Public Health, Quality and Innovation, through the Sub-Directorate General for Healthcare Quality and Innovation, has also confirmed to representatives of the Spanish Federation for Rare Diseases (FEDER) its interest in collaborating with the Rare2030 project.
Rare2030 brings together patients, professionals and opinion leaders to propose policy recommendations for a better future for the rare disease community. Supported by EU bodies, this project is the opportunity to present to the European Parliament and the European Commission strong policy recommendations from key stakeholders, taking into account current and future trends in rare diseases. In order to reach consensus on the Spanish recommendations, different national events (foresight) will be held around November with the support of AELMHU, which once again shows its commitment to people living with a rare disease.