Research and data sharing initiatives advance rare disease care

New initiatives are being launched to improve the diagnosis and treatment of rare diseases through research funding and enhanced data coordination.

The Fundación Ramón Areces has awarded grants through its second PINERA Program in Rare Diseases. Two specific projects were selected: INTEGRA-DM1, a multicenter research project focused on preventing and treating type 1 myotonic dystrophy, and CebraÚNICA, a platform designed to facilitate diagnosis and the development of personalized therapies.

In a separate effort to improve patient care, experts at the XI International Congress of Orphan Drugs and Rare Diseases emphasized that data exchange is essential for medical equity. The Red Únicas initiative, promoted by Hospital Sant Joan de Déu, Feder, and the Ministry of Health, aims to connect hospitals and professionals through a digital network. This model seeks to ensure that clinical data can be shared across networks to provide coordinated, longitudinal care, following the principle that “data should travel, not the patients.”