DSF’s 2025 Day of Dravet regional workshops provided the opportunity for patient families to come together to learn, connect, and feel supported. While many of our patient families are already connected through social media, the opportunity to connect in person is especially meaningful. Over 500 community members participated at these workshops! It was incredible to […]
That’s a Wrap on the 2025 Day of Dravet Workshops! Read More »
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
Dravet Syndrome Community Participates in Rare Disease Week on Capitol Hill Read More »
Northeast RegionDay of Dravet Saturday, September 20 Hershey Lodge (Hershey, PA) Register here Registration is just $25 per family thanks to the generous support of our sponsors! Event Information and Schedule Saturday September 20: Day of Dravet Workshop 9 am – 4 pm We will be in the Great American Hall meeting space at Hershey
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West Region Day of Dravet Saturday, June 21, 2025 Point Defiance Zoo & Aquarium (Tacoma, WA) Register here Registration is just $25 per family thanks to the generous support of our sponsors! Event Information and Schedule Saturday June 21: Day of Dravet Workshop 9 am – 4 pm We will be in the private Education
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Midwest RegionDay of Dravet Saturday, August 23Day of Dravet Workshop held at Brittane’s Event Center (Gurnee, IL) Dinner & Evening Events held at Great Wolf Lodge (Gurnee, IL) Register here Registration is just $25 per family thanks to the generous support of our sponsors! Event Information and Schedule Saturday August 23: Day of Dravet Workshop
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Mountain Region Day of Dravet Saturday, March 29, 2025 Morgan’s Wonderland (San Antonio, TX) Register here* *Registration closed on March 27, but if you’re interested in attending please email shannon@dravetfoundation.org and we’d love to see you! A NOTE ABOUT THE MEASLES OUTBREAK IN TEXAS As attendees will be traveling from various areas to participate in
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Southeast Region Day of Dravet Saturday, April 12, 2025 Wilderness at the Smokies – Stone Hill Lodge (Sevierville, TN) Online registration has closed, but if you are interested in attending please email shannon@dravetfoundation.org and we’d love for you to join us! Event Information and Schedule Saturday April 12: Day of Dravet Workshop 9 am –
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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
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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
DSF Legislative Advocacy Update Read More »
