This free multi-day event, hosted by the Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases, brings together rare disease advocates from across the country to make their voices heard with their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate […]
2026 Rare Disease Week on the Hill Read More »
When people with disabilities have access to essential health care and services, they can live on their own terms. Medicaid makes this possible. It provides critical health care and services to millions of children and adults with disabilities, so they can live healthier, fuller lives. Infants with disabilities get a strong start in life through
Protect Medicaid Services Read More »
Please join us in welcoming our new Marketing Manager & Digital Communications Manager, Amanda (Mandy) Nehme-Clicerio. Mandy brings a blend of professional marketing expertise and lived Dravet caregiver experience to her role as Marketing & Digital Communications Manager at DSF. Based in New Jersey, she has spent nearly a decade in B2B marketing roles, building
A Warm Welcome to Our Newest Staff Member! Read More »
We’re excited to share that registration is now open for the 2026 Dravet Syndrome Foundation (DSF) Family & Professional Conference, taking place June 25–27 in Orlando, Florida! This much-anticipated biennial event brings together families, caregivers, clinicians, researchers, and industry partners for several inspiring days of learning, connection, and community. Whether you are a parent navigating
Registration is Now Open for the 2026 DSF Family & Professional Conference in Orlando! Read More »
Looking ahead to the coming year, we are committed to building on the momentum our community has created. With your support, we will broaden our efforts, deepen our impact, and continue moving our mission forward. Thank you for being part of our story – we need your help to continue this work. With potentially disease-modifying
How Will You Join Us in Building Momentum in 2026? Read More »
All of us at DSF are pleased to extend our heartfelt congratulations to Joseph Sullivan, MD, as he enters an exciting new phase of his distinguished career. After many years of dedicated clinical service at the University of California, San Francisco (UCSF), Dr. Sullivan has accepted the position of Vice President of Clinical Development at
Congratulations and Best Wishes to Dr. Sullivan! Read More »
As the year comes to a close, I wanted to take a moment to reflect on what you helped make possible, and to thank you for your continued commitment to the Dravet patient community and DSF. Thanks to our extraordinary community of supporters, this year was one of progress, impact, and meaningful change. Through our
Celebrating a Year of Impact Read More »
Amanda Nehme-Clicerio brings a blend of professional marketing expertise and lived Dravet caregiver experience to her role as Marketing & Digital Communications Manager at the Dravet Syndrome Foundation (DSF). Based in New Jersey, she has spent nearly a decade in B2B marketing roles, building digital ecosystems, shaping brand stories, and translating complex information into clear,
Amanda Nehme-Clicerio – Marketing & Digital Communications Manager Read More »
Norman “Patrick” Robinson III passed away Monday December 1st at 7:45pm at Studer Children’s Hospital in Pensacola, FL. He was surrounded by his family with all the love and support they could offer. Born on March 11, 2009 in Panama City Fl. He spent the first half of his life in Panama City until we
Norman “Patrick” Robinson III Read More »
For families living with Dravet syndrome, 2025 has been a year filled with moments of hope, progress, and connection. Our community has come together to celebrate not only scientific breakthroughs but also the bonds that make this difficult medical journey a little less daunting. Breakthroughs on the Horizon Imagine a child living with daily seizures,
A Year of Gratitude and Progress for the Dravet Community Read More »
