Patients and families living with Chiari malformation, Ehlers-Danlos syndrome, syringomyelia, dysautonomia, and many related disorders rely on common sense policies that keep them safe, relatively healthy, and able to thrive.
Below please find a few handouts and materials that help explain what Americans who are impacted by these conditions want and need in terms of support from their elected officials.
For Patient Advocates: You can learn about advocacy, watch our video series, & read about policies that matter here.
What are these disorders and how are patients impacted?
There are several simple ways that an elected official in the U.S. Congress can act to improve the lives of millions of Americans. These are just a few…
Support American Families with Neurological & Rare Disorders
The federal government spends pennies on the dollar supporting diseases and disorders like those that impact our community. Please ensure this funding does not get cut. Even indirect cuts can devastate research progress. Learn how.
Millions of Americans rely on Medicaid. Understand how cuts will directly impact our community. Read more and hear Reanna’s story.
This is the lowest-stakes way to support constituents living with rare and chronic disease. Active participation in this caucus signals that Congress members care about their constituents living with rare and chronic illnesses.
There are a few highly specific policy positions that a Congress member can champion in order to achieve these goals. We strongly encourage all of these positions be championed by our community’s elected officials.
Have more questions? Contact us at info@bobbyjonescsf.org.
