New DSF Legislative Advocacy Program Kicks Off

As the Dravet syndrome patient community approaches the possibility of ASO and gene therapy advancements, DSF acknowledges the importance of proactive planning to ensure seamless patient access and insurance coverage when these treatments become available.

This year, we launched our latest initiative, our Legislative Advocacy Program, aimed at ensuring that the concerns of our community are represented in discussions about proposed bills and legislation. As part of these efforts, we recently became a member of the Alliance for Regenerative Medicine (ARM). ARM is an international advocacy organization championing the benefits of engineered cell therapies and genetic medicines for patients, healthcare systems, and society. 

I was excited to participate in a congressional fly-in alongside our Scientific Director, Veronica Hood, PhD, and our Patient Advocacy Director, Shannon Cloud, on July 16th. A congressional fly-in is a meeting where constituents from across the US gather at the Capitol to advocate for common interests. The goal is to create a space for cooperation, education, and understanding between lawmakers and constituents, which can lead to new policies, laws, and programs. (Earlier this year, some of our advocacy team participated in a similiar event hosted by the EveryLife Foundation.) ARM is an international advocacy organization championing the benefits of engineered cell therapies and genetic medicines for patients, healthcare systems, and society. This fly-in offered the opportunity to collaborate with ARM, as well as with fellow patient advocates and biopharmaceutical partners, and meet with legislators from our individual states. During these meetings, we emphasized the significance of current proposed bills and discussed potential challenges ahead.

We are excited to be taking these first steps to help better represent our community’s legislative needs. We will offer a webinar later this year on how patient families can get involved with our Legislative Advocacy Program as it grows. If you have any questions on this new program, please email our Patient Advocacy Director, Shannon Cloud.

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