CCM–CARE Act of 2023

The CCM-CARE Act of 2023 aims to improve research, diagnosis, and treatment for cerebral cavernous malformations (CCM), a blood vessel disease affecting approximately 600,000 people in the U.S. (with fewer than 200,000 diagnosed), particularly those with specific genetic mutations prevalent in New Mexico (common Hispanic mutation) and the Southeastern U.S. (CCM2 Common Deletion). The bill establishes a network of CCM Clinical Research Centers (2 coordinating centers and 6-10 participation centers), expands NIH funding for CCM research including biomarker development and drug trials, and creates CDC surveillance programs to track CCM cases. It also creates a CCM Research Consortium to develop clinical training programs, patient education materials, and regional awareness campaigns, with specific focus on high-impact populations. The legislation requires biennial reports to Congress on CCM research activities, funding distribution, and recommendations for future research.