A participatory process involving nearly 50 people from across Catalonia has identified continuous psychological support, multidisciplinary and coordinated care, and ongoing rehabilitation as key priorities for improving assistance for Huntington's disease. The initiative, promoted by the Directorate General for Health Planning and the Secretariat for Health Care and Participation, has collaborated with the Catalan Association of Huntington's Disease (ACMAH) and the Fundació Hospitalàries Barcelona Nord.
Participants highlighted the need to move towards a comprehensive care model that ensures territorial equity and facilitates ongoing rehabilitation to preserve autonomy. The importance of combating stigma, strengthening awareness, and professional training, as well as fostering social and community life, was also emphasized. For families, the need for psychological and administrative support, and genetic counseling was identified.
To improve care, since July 2025, Health has incorporated Huntington's disease into the Cuida’m health card, which identifies individuals with specific clinical needs for more tailored care. Furthermore, since 2024, Catalonia has had a shared decision-making tool for the disease, developed with input from professionals, affected individuals, and families, offering information, genetic counseling, and resources to evaluate options based on personal preferences.
Huntington's disease is a rare and hereditary condition causing progressive neuron loss and motor, cognitive, and psychiatric alterations. In Catalonia, in 2025, there were 875 diagnosed individuals (505 women and 370 men), with a median age of 57 for women and 55 for men. 69 new diagnoses were registered that year (37 women and 32 men), with a median age of 47 for women and 52 for men.
Currently, there is no cure for the disease, but treatments and multidisciplinary care can alleviate symptoms and improve quality of life. Care must adapt to evolving needs, requiring adequate coordination between health and social services, and support for families and caregivers. The Ministry of Health published the document 'Abordaje Enfermedad de Huntington' in 2026 as part of the Strategy for neurodegenerative diseases.
