This Tuesday, Queen Letizia maintained a working meeting with representatives of the Spanish Federation of Rare Diseases (Feder) to learn about the present and future of this association coinciding with the commemoration of its 25th anniversary.
The meeting, held at Feder’s headquarters in Madrid, served to prepare the central event of the World Rare Disease Day commemorated on February 29 and who usually presides over the Queenhonorary president of the association, according to the entity in a statement.
Feder celebrates his 25th anniversary this year, a period in which he has gone from representing seven to 418 patient organizations, mostly entities less than ten years old, whose purpose is to better understand rare pathologies and help patients and families have a better quality of life. Doña Letizia began her relationship with the federation in 2013 and since then, it is one of the areas where she has invested the most in her institutional function.
In addition to the evolution of the associative fabric of rare and undiagnosed diseases represented within the organization, the president of the federation, Juan Carrión, explained in the talk the main axes that will mark the agenda during this year.
On the occasion of the celebration of the world day of these pathologies, Feder is going to launch a campaign titled ‘In rare diseasesit’s better to prevent than to cure?‘, which aims to focus on the importance of research, early diagnosis and treatment.
The federation emphasizes that prevention is not only that the disease does not appear, but “identify it as soon as possible and act as soon as possible to prevent it from getting worse,” the note adds. The action plan on the international stage has also been addressed, among whose objectives is to establish a European action plan aimed at expanding synergies in the fight against pathologies that are not common.