Several members of the Dravet syndrome community went to Washington, D.C. last week (February 24-26, 2025) to participate in Rare Disease Week on Capitol Hill. This event, sponsored by EveryLife Foundation for Rare Diseases / Rare Disease Legislative Advocates, was a great opportunity for us to learn more about issues that impact our community and what we can do to promote federal legislation which could improve the lives of patients with Dravet syndrome and other rare diseases.
It is truly inspiring to see hundreds of rare disease advocates representing over so many different patient organizations gathered together! While our individual rare diseases may be very unique in many ways, we have so much in common in terms of the struggles that impact our communities. When we come together, our collective voices are so much more powerful!
- There are over 10,000 rare diseases
- There are 30 million people in the United States with a rare disease
- Only 5% of rare diseases have even one FDA approved treatment (Dravet syndrome has had 3 medications approved, so we are fortunate to be in that 5% but we still need more options and ultimately a cure!)
We spent a full day learning about some current and potential legislation in Congress which could benefit our communities. The next day we attended meetings with congressional staff members so that we could share about why these things are important to us. When you have the opportunity to share your personal story, it makes a difference! They really want to hear from the people that live in the districts they represent. Even if you can’t physically go to Washington, you can contact their offices by email, phone, or by meeting with the staff that work in their district office in your state.
Here are some of the things we asked our members of Congress to do to support our community:
- Join the Epilepsy Caucus and support legislation for a National Plan for Epilepsy (H.R. 1189 / S. 494)
- Support Steady and Robust Leadership, Federal Biomedical Research Funding, and Public Health Agencies
- Support the Reauthorization of the Rare Pediatric Disease Priority Review Voucher Program (included in H.R. 1262, Senate bill not yet reintroduced)
- Join the Rare Disease Caucus
- Support the Accelerating Kid’s Access to Care Act (H.R. 1509 / S. 752) – This would allow doctors to register to accept Medicaid from other states. Right now, most families cannot visit a Dravet specialist in another state and use your state Medicaid to pay for it. This would make it so much easier for families to see neurologists or specialists in other states!
This list only scratches the surface of what Congress could do to help our community! We can also be actively engaged in state and local efforts where our advocacy can have a real impact on everyday life issues.
If you’d like to stay up to date with issues that impact our community, please visit our Legislative Advocacy page for current information and action alerts that make it very easy to contact your legislators. If you have any questions or would like to get more involved, please email shannon@dravetfoundation.org.
Together, we can make a difference!
