Día Mundial de las Enfermedades Raras en Sevilla

Every year, the Spanish Federation of Rare Diseases (FEDER) celebrates its official event for World Rare Disease Day. This year, the city chosen for the celebration was Seville, the city where the organization was born 25 years ago. The event took place at the Palace of Congresses and Exhibitions of Seville, coinciding with the anniversary of the Federation.

The gala was hosted by Isabel Motero Vázquez, Director of FEDER and its Foundation, and was attended by Her Majesty Queen Letizia; the President of the Junta de Andalucía, Juanma Moreno; the Minister of Health, Mónica García; the Government Delegate in Andalusia, Pedro Fernández Peñalver and the Mayor of Seville, José Luis Sánz.

During the event, FEDER was represented by its president, Juan Carrión; its Board of Directors; various patient associations; representatives of the pharmaceutical industry and other collaborating agents.

Specifically, this quarter of a century has been the focus of its campaign 'In rare diseases, prevention is better than cure', which it has been developing within the framework of World Rare Disease Day, celebrated on February 29, and which is marked by three key pillars: research, early diagnosis and access to treatments and therapies.

The event also acknowledged the involvement of six patient associations and presented various awards:

  • Recognition of the associative movement for its capacity to transform society to Moisés Abascal, on behalf of the Association for Impairments Affecting Growth and Development, and Francesc Valenzuela, secretary of the and to Francesc Valenzuela, secretary of the Catalan Association of Neurofibromatosistwo of the founding entities of FEDER.
  • Recognition of the associative movement for its work in the provision of services to Xabier Caballero, president of the Murcian Association of Cystic Fibrosis and Carmen López, director of the Galician Federation of Rare Diseasesthe first two entities to have their Direct Care and Specialized Services centers accredited.
  • Recognition of the associative movement as a driving force in the promotion of research to Martín Jiménez, president of the HHT Spain Association and Isabel Campos, president of the Federation of Ataxias of Spainthe first two entities to benefit from the Call for Research Grants.

From AELMHU, we would like to congratulate FEDER for its 25th anniversary and for its work to promote the rights of those living with a rare disease and in search of diagnosis, generating strategies that contribute to improve their quality of life.