The Spanish Association of Orphan and Ultra-Orphan Medicines (AELMHU) joined forces on Monday with the Spanish Federation for Rare Diseases (FEDER) in the meeting prior to the official World Rare Disease Day event, which this year was held in Castellón.
The event, held at the Real Casino Antiguo in Castellón, was attended by the president of AELMHU, Beatriz Perales, and Sergio Bullón, member of the Board of Directors, as well as the technical team and representatives from member companies. The Councilor for Social Welfare of the City Council of Castellón, Clara Adsuara, welcomed all participants on behalf of the mayor of the city and emphasized Castellón's commitment to individuals and families living with these conditions, with the aim of "leaving no one behind."
She was accompanied by Elena Albalat, Regional Minister for Social Services, Family, and Equality of the Valencian Regional Government; Marisa Torlà, Provincial Deputy for Social Welfare; Juan Carrión, President of FEDER; and Mauro Rosati, member of the FEDER Board of Directors and representative of the Federation in the Valencian Community.
In addition, a video of the World Day manifesto was also screened, calling for improvements in patient care in three main areas: promoting research and knowledge to gain more information about the origin, evolution, treatment, and prognosis of rare diseases; ensuring rapid and equitable access to diagnostic tests; and achieving timely and equitable access to treatments and therapies.
Finally, awards were presented to each of the 41 organizations that form part of the rare disease association movement in the Valencian Community, as a sign of support for their work and daily involvement.
