About the CACNA1A European Association

Why a European association

When our son Martí was diagnosed, we found an extraordinary community in the CACNA1A Foundation in the United States: families, doctors and researchers working together. But they were thousands of kilometres away, and most of what we read was in English.

We realised that families in Europe needed a place of their own: close by, in their languages, and connected with doctors and hospitals here. That is why, in March 2026, we founded the CACNA1A European Association in Catalonia.

Our aims

• Promote scientific research on the CACNA1A gene and its related disorders.
• Support, guide and inform affected people and their families.
• Build and maintain a network of families in Catalonia, Spain and Europe.
• Share medical, scientific and social information about this rare disease.
• Raise awareness of rare diseases and, in particular, of CACNA1A-related disorders.
• Raise funds for research projects, family support and the association's activities.
• Collaborate with healthcare professionals, research centres, hospitals, universities and public bodies.

Where we come from

Before founding the association, we took part in awareness campaigns for paediatric rare diseases, such as «El Viatge de Nica», a solidarity campaign promoted by Hospital Sant Joan de Déu Barcelona to give visibility to research on rare diseases in children.