María Baselga

International Legal Advisor,
Rare Diseases Advocate/Patient Voice

María Baselga is an international legal advisor based in Barcelona, Spain, and the mother of a child living with CLN5 Batten disease, an ultra-rare neurodegenerative condition.
Following her daughter’s diagnosis, she became actively involved in rare disease advocacy, with a particular focus on paediatric clinical research, patient engagement and improving access to innovative therapies for children with rare diseases.
Through her family’s experience participating in a cross-border gene therapy clinical trial, María has developed a strong interest in the practical, ethical and regulatory challenges faced by families accessing clinical research across countries. She regularly contributes to discussions on patient and parent involvement in research and advocates for greater collaboration between families, researchers, healthcare institutions and regulators to accelerate the development of treatments for children with unmet medical needs