Shannon Cloud

With the recent passage of HR 1 by Congress, rare disease communities – including Dravet syndrome – are seeking clarity on how the new legislation may impact their loved ones and families, particularly in areas such as access to care, insurance coverage, and treatment affordability. One of the programs most impacted from these major policy […]

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

DSF’s Day of Dravet Workshops are a time for patients and their families to come together to learn about research and treatment options, connect with one another, and be a part of a DSF’s shared vision for a better outcome for those affected by Dravet syndrome. They take place on opposite years of our biennial

DSF has launched a Legislative Advocacy Program and now is the time for our community to get involved! You may feel like there is nothing that happens in Washington, D.C. that benefits your family, but that is not the case! There are quite a few pieces of legislation pending in Congress that can have a

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