Cacna1A Foundation Inc

On July 18, 2024, the CACNA1A Foundation hosted its third annual Research Roundtable, bringing together 50 researchers, clinicians, industry representatives, and NINDS grant managers to advance clinical trials for CACNA1A-related disorders. We also held our second hybrid Creating Connections Community Conference, uniting over 200 participants, including families and experts, to share research updates and support. This event remains a vital space for connection, education, and empowerment in the rare disease community.

The CACNA1A Foundation raised awareness by participating in national and international events, including Global Genes, the American Epilepsy Society, and Rare Disease Day at the Broad Institute. We hosted 22 virtual meetups for families and launched the Cure Club to boost research participation through personalized outreach. Additionally, we advocated for a unique ICD-10 code for CACNA1A-related neurodevelopmental disorders at the ICD-10 Coordination and Maintenance Committee Meeting.