The Spanish Association of Orphan and Ultra-Orphan Medicines (AELMHU) attended the official event for Rare Disease Day on Tuesday, organized by the Spanish Federation for Rare Diseases (FEDER) in Castellón.
The event, opened by Her Majesty Queen Letizia, was attended by institutional representatives, such as the president of the Valencian Regional Government, Juan Francisco Pérez Llorca, the Minister of Health, Mónica García, the Director General for People with Disabilities of the Valencian Community, Bárbara Congost, and the Mayor of Castellón, Begoña Carrasco, as well as patient associations, family members, members of the pharmaceutical industry, and citizens committed to rare diseases.
In her speech, Her Majesty Queen Letizia highlighted the importance of equity in the diagnosis, research, and treatment of rare diseases, with the aim of improving care for all patients. "Because when they exist, inclusion is part of the structure, and when inclusion is part of the structure, rights and the value of life are recognized, " she said.
Next, Juan Carrión, president of FEDER and its Foundation, lamented that, despite the progress made in recent years in addressing rare diseases, there is still a long way to go, since "the average time to diagnosis from the onset of symptoms exceeds six years.". He also pointed out that "only 6% of rare diseases have a pharmacological treatment."
For his part, at the regional level, Juan Francisco Pérez Llorca has focused on efforts in the Valencian Community to reduce diagnosis times, networking between hospitals, and research through the Translational Research Alliance for Rare Diseases, which already has 250 researchers.
The Minister of Health, Mónica García, has pointed out that, although there is still progress to be made in research, diagnosis, and treatment, the Ministry has expanded neonatal screening programs from 7 to more than 20 pathologies, is promoting the Únicas network with 30 hospitals, and is working on updating the National Health System's Rare Diseases Strategy.
Finally, Begoña Carrasco, mayor of Castellón, gave an emotional speech dedicated to the patients: "There is no life without death, nor health without illness. And yet, despite everything, we continue to be the greatest miracle in the world."
The event concluded with the presentation of the 2026 ERDF Awards, recognizing four initiatives in rare diseases:
- Lifetime Achievement Award for Teresa Navarro Ferreros, for dedicating her life to defending the rights of people with disabilities, rare diseases, and undiagnosed conditions. Tomás Coronado, her husband, accepted the award on her behalf.
- Strategic Alliance Award to the Royal and Illustrious Board of Ladies of Honor and Merit, for its ongoing commitment and unconditional support to people with rare and undiagnosed diseases. Its treasurer, Almudena Fernández-Golfín Arenillas, accepted this award.
- The "Promoting Research" award went to the "Alianza Empresas Inversoras de Vida" (Life Investment Business Alliance ) initiative, created and promoted by the Carrefour Solidarity Foundation to facilitate the diagnosis of 1,000 children who could not be diagnosed using standard procedures. The award was accepted by María Cid, general director of the Carrefour Solidarity Foundation, who extended her gratitude to all the companies that bring this alliance to life.
- Regional award to Hospital Universitari i Politècnic La Fe, for its commitment to diagnosis and specialized care. It was collected by José Luis Poveda, manager of Hospital La Fe.
