Patient Participation

Recursion Announces Enrollment of First CCM Patient in Phase 2

Recursion Pharmaceuticals has announced the enrollment of the first CCM patient in Phase 2 of their REC-994 trial. This is the first industry-sponsored trial of a medicine for cerebral cavernous malformations., a huge milestone in the path toward better treatments. Complete announcement Trial information (will be updated shortly with trial site locations as these become…

  CCM2 exon 2-10 deletion research, led by Alliance to Cure Cavernous Malformation families and Duke University, has identified a new founder mutation. Read coverage in the Atlantic magazine. The collaborative work done by families affected by the CCM2 exon 2-10 deletion, a very specific form of the illness, is bringing CCM visibility and understanding to…

Alliance to Cure Cavernous Malformation Receives $600,000 Award from the Chan Zuckerberg Initiative to Advance Rare Disease Research

New Grants Support Organizations Prioritizing Diversity and Diagnosis in their Disease Areas  CHARLOTTESVILLE, VA (November 3, 2021) — Today, the Chan Zuckerberg Initiative (CZI) announced $13 million in funding for 40 patient-led, rare disease advocacy organizations that are working alongside researchers and clinicians to accelerate research in their disease areas. These grants are part of…

Update Your Cavernous Malformation Patient Registry Profile

Update your profile or join now. Why Participate in the Registry? Join the international research community We need you! Clinical research and treatment trials rely on volunteer participants to help generate critical data to understand cavernous malformation and how to treat the illness. Every profile helps! Each registry profile adds to our body of knowledge….