Rare diseases are not a niche issue. They are a system-level challenge.
At Salamanca, during the lecture “The Rare Diseases Strategy of the Spanish National Health System and the Únicas Network”, Francesc Palau — distinguished investigator at Barcelona Children’s Hospital Sant Joan de Déu and key member of the Better AI Health Project Consortium — clearly framed what truly matters:
Data infrastructure comes before better care.
Spain’s strategy — spanning early disease detection, diagnostics, institutional registries (ReeR, national reference centres such as CSURs and ERNs), therapies, integrated healthcare, health economics, and coordinated governance — demonstrates a systemic approach to value creation. Real impact happens when data quality, interoperability, and operational sustainability are treated as first-class priorities within the National Health System and across regional governments.
The Únicas Network, supported by the Spanish Ministry of Health, represents a concrete step toward health equity for pediatric patients , building a collaborative ecosystem across clinicians, researchers, and institutions.
This vision strongly resonates with BETTER:
- Federated
- Privacy-preserving
- Interoperable AI infrastructures
Designed to connect data across institutions — without creating new silos.
