Alliance to Cure Cavernous Malformation Programs

A quick list of our many activities

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

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