As a closing of the regional events of the World Day for Rare Diseases, the Assembly of Madrid has hosted today, Wednesday, March 20, a day together with the Spanish Federation of Rare Diseases (FEDER), which has congratulated for its advocacy for the improvement of the living conditions of these patients.
The event was opened by the President of the Assembly, Enrique Osorio, who placed special emphasis on the need to have the unanimous support of the parties that make up the Assembly in order to make progress in the regulation of rare diseases and orphan drugs.
Then, Daniel de Vicente, member of the Board of Directors of FEDER, made a small radiography on rare diseases in the Community of Madrid, in addition to recalling the main messages of this year's World Day campaign, focusing on research, diagnosis and treatment, as crucial aspects for the promotion of the prevention of rare diseases and their consequences.
The main political parties at the regional level, such as Sara Bonnati (PSOE), Belén Gómez (VOX), Marta Marbán de Frutos (PP) and Marta Carmona (Más Madrid), also took part in the event.
The second block of the event was led by representatives of the associative movement, such as Carmen Sever, president of the Spanish Association of Leukodystrophy in Spain, and Sara González, vice-president of the Spanish Foundation for Prion Diseases, both agreeing on the importance of early diagnosis of rare diseases.
Together with them, Silvia Avila, president of Duchenne Parent Project and Leticia Mariátegui, president of the Turner syndrome association of Madrid gave their testimonies and gave visibility to the work of patient associations.
Isabel Motero Vázquez, director of FEDER was in charge of closing the day, recalling the need to give continuity and impetus to research, expanding and standardizing diagnostic tests and ensuring access to treatments and therapies.
The event concluded with a visit to the exhibition Eres Arte, the result of the National Photography Contest promoted by FEDER and Sanofi in which patients with Rare Diseases and their community reveal their realities, perceptions and personal experiences through photography.
