Join us in raising awareness, sharing knowledge, and supporting those affected by CADASIL. Your time and expertise can make a meaningful impact in building a stronger, supportive community.

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• Join an ongoing study

  Learn about and join ongoing studies happening around the world.

• Learn About the Rare Disease Congressional Caucus (RDCC)

  Discover the important work being done to support rare disease patients and their families.

• Ask your legislators to join the caucus (RDCC)

  Take action by writing to your congress members to encourage them to support policies that benefit rare disease communities. If they are already a member, send a letter to thank them!

• Learn about the EveryLife Foundation for Rare Diseases

  This foundation is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful science driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

• Learn about the Congressional Neuroscience CAUCUS and their partnership with the American Brain Association

  The Congressional Neuroscience Caucus is a bipartisan group in the U.S. Congress that works to raise awareness about brain and nervous system research, support neuroscience-related policy, and promote funding for scientific studies. It aims to foster collaboration between lawmakers, scientists, and advocacy organizations to address neurological disorders and advance the understanding of brain health.  The American Brain Association collaborates with the Congressional Neuroscience Caucus to advocate for policies that support brain research and neurological disorder treatment. By working together, they aim to increase federal funding for neuroscience initiatives and raise awareness about the importance of brain health. The partnership also helps to bring scientific advancements and issues affecting individuals with brain disorders to the attention of lawmakers, encouraging evidence-based decision-making in public policy. 

• Ask your legislators to join the Congressional Neuroscience CAUCUS

  Take action by writing to your congress members to encourage them to support policies that benefit rare disease communities. If they are already a member, send a letter to thank them!