DSF Advocates for Rare Diseases in Washington, DC

Several DSF staff members from our Patient Advocacy Team went to Washington, DC last month 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.  

Rare Disease Week 2024 DSF Team2

United.  Amplified.  Stronger than Ever. 

That was the theme for the week and it could not be any more true! It was incredible to see more than 700 rare disease advocates representing over 200 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!  

Rare Disease Week 2024 Group

Did you know?

  • There are over 7,000 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 on the hill 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 DC, you can contact their offices by email, phone or with a meeting with the staff that work in their district office in your state. 

Here are some of the things that members of Congress can do to support our community:  

  • Join the Epilepsy Caucus (Click here to learn how to ask your Representative and Senators to join!)
  • Join the Rare Disease Caucus
  • Support increased funding for epilepsy research (via programs in NIH, DOD, CDC and VA)
  • Support the Safe Step Act (HR 2630 / S 652) – This would establish an exception process to the “step therapy” requirements we experience when trying to get insurance approval for some medications. Wouldn’t it be nice if instead of the insurance company requiring that the patient try and fail certain other medications first, we could more easily get approval for the medication our doctor prescribes without having to waste time trying medications that won’t be as effective or have negative side effects just to prove they don’t work?  
  • Support the Accelerating Kid’s Access to Care Act (HR 4758 / S 2372) – This would allow doctors to register to accept Medicaid from other states. Right now, you 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 any of these issues are important to you and you’d like to learn how to get more involved in advocacy efforts, please email me at shannon@dravetfoundation.org and I’d love to help!  If you don’t even know who represents you at the federal or state level, I can show you how to find out who those legislators are and how to contact them about what matters to you. I’d be happy to work with you to craft a message about what they can do to help you and your family.  

DSF will be sharing more information in the future about all of these initiatives and how our community can get engaged,  so stay tuned to find out how you can help!  Together, we can make a difference!   

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