Rare Disease Week

Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. While we had hoped to host this year’s event in-person, for the safety of all advocates, Rare Disease Week will be going virtual for 2022.

Virtual Rare Disease Week on Capitol Hill 2022 will be held February 22nd through March 2nd and will include the same opportunities as in-person Rare Disease Week, plus more!

Learn More
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Click here to register

Hometown Efforts

Click the icon below to learn more about how to fundraise, resources for contacts, and how to share your story.

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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
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See a Summary of 2021 RDW to Prepare for 2022!

Your BDSRA Staff attended sessions and discussed pressing concerns in the Rare Community with State and Local Representatives during Rare Disease Week 2021. We are continuing to advocate for bills and initiatives important to the Rare Disease Community in 2022.

The main bills focused on in 2021 include:

Click the links to learn more about each of these initiatives. Check back to learn about what our focus will be for Rare Disease Week 2022. We look forward to you joining us this year!

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 Morgan DeBoth, BDSRA Vice President of Support & Advocacy at mdeboth@bdsra.org.

The Burden of Rare Diseases

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.

Read The Full Report