This new collegiate body aims to coordinate the various public systems involved, including health, social services, education, and employment, as explained by spokesperson Miguel Barrachina.
“"People affected by these diseases constitute a very vulnerable group, with a quality of life severely affected by their illness, which in many cases also substantially affects their own families."
80% of these pathologies are genetic in origin, meaning that many of those affected are children who require special care from infancy. The processing of this decree was declared urgent on January 30, highlighting the strategic priority the Consell places on this area.
The Interdepartmental Commission will be responsible for designing and proposing a regional comprehensive care plan, as well as coordinating the actions of the ministries to optimize resources and improve results. It will also identify unmet needs, promote research, improve access to treatments, and develop institutional coordination protocols.
Furthermore, the commission will foster the active participation of patient associations, recognizing their fundamental role in defining public policies. This initiative will expand the functions of the Assistance Coordination Committee for the Management of Healthcare for People with Rare Diseases in the Valencian Community, created in 2021. Currently, between 6,000 and 8,000 rare diseases are known, many of which have limited knowledge about their natural evolution, hindering early diagnosis and the application of preventive or therapeutic measures.
