United States – Take Action on a federal level
On February 28, 2023, Senator Ben Ray Lujan introduced federal legislation called the CCM-CARE Act of 2023, also known as Senate Bill 543 or S.543. This legislation was under consideration until the end of the session in December 2024, when it expired. It will be reintroduced in 2025 after we secure a Republican co-sponsor in the Senate. You can help with this effort if you live in a state with a Republican Senator. Please contact us at info@alliancetocure.org if you’re willing.
We need you to call your legislators to tell them this legislation is important to you. We particularly need those of you represented by members of the Senate HELP Committee and the House Energy and Commerce Committee to call your legislator’s office and ask them to co-sponsor the bill and those of you living in states where we have active research programs.
The CCM-CARE Act calls for the following:
- Support for the creation of additional Centers of Excellence that can coordinate drug trials as well as secondary clinical centers that can provide outstanding care;
- Increased funding for research at all levels – basic, translational, and clinical;
- Prioritization of CCM medications at the FDA since, unlike other illnesses, we do not yet have a single approved pharmacological treatment; and
- Collection and analysis of data on CCM by the Center for Disease Control so that we better understand how many people are affected by the illness and how they are affected.
advocate in your state
Cerebral cavernous malformation (cavernoma, cavernous angioma) is a rare disease with some pockets of higher incidence. Alliance to Cure Cavernous Malformation supports members who advocate for state-level funding and education for improved care, particularly in states with pockets of higher incidence.
CCM1 Common Hispanic Mutation
In New Mexico, the Alliance to Cure Cavernous Malformation supported members who successfully advocated for House Joint Memorial 007 in 2019. We have worked with the state Department of Health to enact the measures described in the Memorial and secured three years of appropriations funding for CCM care and research at the University of New Mexico. We additionally support members who may be interested in similar efforts to benefit those who are affected by the CCM1 Common Hispanic Mutation in surrounding states.
CCM2 Exon 2-10 Deletion
There is an opportunity for advocacy in select states where the CCM2 exon 2-10 deletion is more prevalent. This could include South Carolina, Mississippi, Louisiana, Texas, Oklahoma, Kansas, and elsewhere. Once we have a better understanding of the genealogy and the hotspots, we will move forward with educating legislators on the needs of their state.
Other States
Members in every state are encouraged to join other patient groups to participate in Rare Disease Day at their state capitol, usually on February 28th, and to advocate for better care for rare disease patients all year. There are opportunities to do this through the National Organization for Rare Disorders Rare Action Network. From their website: “The mission of the Rare Action Network® (RAN) is to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state-based initiatives across the United States.”
Updated 3.29.2025
