Research and Treatments
- Study and trial enrollment, industry consultation on clinical trial design and partnerships
- Annual International Scientific Meeting – attendees from 5 continents, the only meeting entirely focused on cavernous malformation research and care
- Patient Registry, now directly accessible by researchers
- DNA and Tissue Bank used by labs around the world
- Patient education regarding non-pharmaceutical interventions being researched to reduce risk.
- Free genetic testing for anyone with multiple lesions that can’t be explained by a DVA or history of brain radiation and who can’t obtain insurance coverage for testing
- Patient educational materials: booklet, website, webinars, and video presentations
- Patient-Expert Certification Program to train mentors and assist in standardizing knowledge
- Center of Excellence Program with Centers of Excellence around the United States
- Clinical Care Consensus Guidelines published in Neurosurgery in 2017
- Outreach to special populations: including to
- those affected by the Common Hispanic Mutation,
- Black CCM patients,
- the CCM2 Common Deletion project that traces genealogy among a related group of families in Appalachia, the Deep South, and Oklahoma,
- those of Eastern European Ashkenazi descent
- those with CCM3 mutations
Patient Support and Empowerment
- Supportive community: on Facebook, our website’s Community Forum, virtual peer support meetings, and regional organized in-person meetups.
- Patient conferences and events: regional and national
- Opportunities to engage in legislative advocacy and awareness-raising.
Updated 12.30.21, Reviewed 4.14.22