CCM1 Common Hispanic Mutation
In New Mexico, 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 will be seeking further opportunities for legislative support for the development of the state’s CCM programs. 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
We believe there will be 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 in 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 4.15.22
