It was great to adress a full room at the Spain National Assembly (Congreso de Diputados) today in Madrid.
The President of the Spain National Assembly, Mrs Francina Armengol, together with a panel of eminent members of the European Parliament (MEP Susan Solis Perez MEP, Izaskun Bilbao, MEP Rosa Estaras Ferragut) and national Parliament, Juan Carrion (Presidente de FEDER ONG - Rare Diseases Spain), and myself, on behalf of EURORDIS-Rare Diseases Europe, call for and commit to a European Action Plan for Rare Diseases.
President Armengol said "Commitment to a European Action Plan on Rare Diseases is absolutely essential. We wish the European Commission to engage in the process toward a European Action Plan".
This policy event, in the broader framework of the Spanish EU Presidency, strengthens the commitment of the Spanish Minister of Health at the Conference on Rare Diseases held Bilbao in October. Spanish action follows and reinforces the French EU Presidency's High Level Conference of 14 Ministers in Paris in February 2022 and Czech EU Presidency's European Expert Conference in Paris in October 2022, which culminated with a Call from the Czech Presidency supported by 22 EU members states.
Since 2021, the European Parliament has been highly committed to a European Action Plan on Rare Diseases and reiterated its call for it in different formats, including a Plenary debate session and letters to the President of the Commission.
Additionally, in September, at an official side event (co-organised by Spain, Sweden, EURORDIS and RDI) of the UN General Assembly dedicated to UHC and Rare Diseases held at the NY UN Headquarters, the Health Ministers of France, Spain, and Sweden called for such a European Action Plan, further solidifying the link with the UN SGDs Agenda 2030 and UHC.
While there is a clear bottom-up push as more EU Member States are adopting or developing new national action plan, the global framework of SDGs and UHC, as well as the consensual basis of Rare 2030, offer all the elements for a new comprehensive goal based strategies, driven by a holistic life long approach to person's need and solidarity.
