The executive director of the Spanish Association of Orphan and Ultra-Orphan Drug Laboratories (AELMHU), Marian Corral, attended the presentation of the Health and Social Care Strategy for Rare Diseases in Castilla-La Mancha, which took place on Monday in Toledo.
During the conference, the Regional Minister of Health for Castilla-La Mancha, Jesús Fernández Sanz, highlighted the importance of this Strategy in advancing equity, humanization, and improving comprehensive care for people with rare diseases and their families. He also announced that by 2027, 40 diseases will be screened in its Neonatal Screening Program for Congenital Diseases.
The conference was also attended by representatives of various patient organizations, such as Santiago de la Riva, vice president and member of the Board of Directors of the Spanish Federation of Rare Diseases (FEDER), as well as representatives from the clinical field, such as Encarna Guillén-Navarro, coordinator of the ÚNICAS Network.
Among the main points of the document are the creation of an automated digital registry, the reinforcement of early diagnosis, the implementation of a comprehensive care model, the development of telemedicine, and the promotion of research, training, and participation.
In addition, the Strategy also addresses the need to ensure equitable access to orphan drugs through measures such as regional protocols aligned with national ones to speed up the availability of treatments; facilitating a closer dispensing circuit, with greater coordination between hospital pharmacies, community pharmacies, and primary care; ensuring clear and personalized information for patients and caregivers; strengthening continued access to rehabilitation therapies; specific procedures for early access in the pediatric population; and greater coordination between Health, Pharmacy, and Social Services to ensure continuity of care.
