TAKE ACTION
Click the megaphone icon to access tools to advocate for important initiatives in the Rare Disease Community:
- Call your Representative
- Send a letter
- Use your voice on social media
Advocacy Tips from a Batten Father
Advocacy Tips from Batten Mothers
Interested in Advocating?
Feel free to share this BDSRA one-pager in your meetings with state and local representatives!
Get Involved
We encourage each family, friend, or advocate to learn more about how to advocate at the national and international levels. To learn more about how to advocate for topics such as newborn screening, early Medicaid access, and disability rights, check out the rest of our Advocacy Toolkit, or email Patrick Kotnik at patrick@bdsrafoundation.org.
Every Life Foundation recently published a study on the burden of rare disease. The findings demand attention from researchers, policy makers, healthcare providers, employers. There is an urgent need to fund research, enhance awareness, and improve access to diagnosis, care, and treatment of rare disease. Contact your elected representatives, share the Study findings, and urge Congress to support important rare disease appropriations priorities that would advance critical rare disease research and therapy development at the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration.
