On this Rare Disease Day, we are honored to announce the National Organization for Rare Disorders (NORD) has awarded the Alliance to Cure Cavernous Malformation this year’s prestigious Abbey S. Meyers Leadership Award. There are 2000 rare disease organizations, 330+ of which qualify to be members of NORD. NORD recognizes one organization each year for…
February 15, 2023 –Recursion Pharmaceuticals has twelve US sites enrolling cavernous malformation patients in Phase 2 of their REC-994 Sycamore trial. This is the first industry-sponsored trial of a medicine for cerebral cavernous malformations, a massive milestone toward better treatments. The most recent site to open is Emory University in Atlanta. Please visit our website’s…
Learn more about how clinical trials work, check out some Myths vs Facts and get your questions answered with our FAQs. Still have more questions? Reach out at ClinicalTrials@AllianceToCure.org
August 1, 2022 – The atorvastatin experimental proof of concept trial to treat cavernous malformations with symptomatic hemorrhage, hosted at the University of Chicago, has completed enrollment. We congratulate and are grateful to all those who are participating! Along with the atorvastatin trial, the parallel Trial Readiness project at the University of Chicago has also…
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…
