Timothy Syndrome Alliance is the international charity for CACNA1C-Related Disorders (CRDs), ultra-rare multisystem conditions including Timothy Syndrome and Long QT type 8. Founded 2019, we support 250+ families in 40+ countries. We build the research infrastructure this community lacked: a patient registry, CACNA1C Portal, biobank and a Scientific Advisory Board. A CZI Rare As One grantee.
Timothy Syndrome Alliance (TSA)
Category
- Charities and not-for-profit
Functions
- Advocacy and policy influencing
- Patient and Public Involvement and Engagement (PPIE)
- Registry development
