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 remarks, Her Majesty Queen Letizia highlighted the importance of equity in the diagnosis, research, and treatment of rare diseases, with the goal of improving care for all patients. “Because when inclusion exists, it becomes part of the structure, and when inclusion is part of the structure, rights and the value of life are recognized, ” she noted.
Next, Juan Carrión, president of FEDER and its Foundation, expressed regret 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 6 years”. He also pointed out that “only 6% of rare diseases have a drug treatment available.”
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, delivered a moving speech to the patients: “There is no life without death, nor health without illness. And, despite everything, we remain 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 was presented to the “Alianza Empresas Inversoras de Vida” initiative, created and promoted by the Carrefour Solidarity Foundation to facilitate the diagnosis of 1,000 children who have not been able to be diagnosed through standard procedures. The award was accepted by María Cid, executive director of the Carrefour Solidarity Foundation, who extended the recognition to all the companies that make this alliance possible.
- 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.
