AELMHU Board of Directors on World Rare Disease Day

AELMHU Board of Directors on World Rare Disease Day

AELMHU's board of directors has traveled to Santiago de Compostela to accompany, once again, FEDER and its more than 400 partner organizations in the celebration of World Rare Disease Day.

This year it was held in Galicia and the event was attended by associations, patients, relatives, clinicians, researchers, institutions, media and pharmaceutical companies. All united to make visible the problems faced by people with rare diseases.

This year's slogan was: "Make time work in our favor", giving the necessary prominence to the demands of undiagnosed people and the time that has to pass until they finally manage to give a name to their disease.

Maria José Sanchez, president of AELMHU, was accompanied by the vice-president, José Luis Moreno, Beatriz Perales, secretary, Sergio Bullón, treasurer and Marian Corral, executive director. The event was organized by the Galician Federation of Rare and Chronic Diseases and her SM. Queen Letizia presided over the event and closed it with a fantastic speech in which she recalled something fundamental: "when you cannot cure, you can take care.