Accompanied by many of its members, AELMHU was present at the event organised by FEDER to commemorate World Rare Disease Day in León.
María José Sánchez, President, and Leticia Beleta, Vice-President, attended the event on behalf of the association to show their support and commitment to the Spanish Federation for Rare Diseases and its President, Juan Carrión.
The journalist Lourdes Maldonado was in charge of presenting and directing the conference in which FEDER associates, patients, national and regional institutional representatives and numerous companies from the pharmaceutical sector actively participated.
FEDER once again enjoyed the presence and support of Her Majesty, Queen Leticia, who acknowledged the fantastic work of the federation: "FEDER is there for answers, for help, for information, for relief, albeit momentary, for comfort on occasions. And to accompany. For administrations and institutions to commit themselves. To push in the same direction, which is that of the value that a person's life has, every day, beyond the figures".
During the meeting, the FEDER 2022 Awards were presented. This year's winners were: the Emergency Protocol for neuromuscular diseases and other rare diseases of the Hospital General Nuestra Señora del Prado de Talavera de la Reina, the Casa de Sofía, the Red Únicas and the Embassy Permanent Representative of Spain to the UN.
The Minister of Health, Carolina Darias, stated during her speech that: "Rare diseases will be an important part of the Spanish Presidency of the European Council in order to achieve the European Action Plan that we are so eagerly awaiting.
AELMHU welcomes this good news and we place ourselves at the disposal of the Ministry of Health to be able to collaborate in everything we can to make this presence a reality.
