Free Webinar: Coronavirus (COVID-19) Resources for DEE Families DEE-P Connections is hosting a special webinar, Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19 on March 19 from 8-9pm ET. This webinar will be moderated by Heidi Grabenstatter, PhD - Science Director of the International Foundation for CDKL5 Research, and will feature three [...]
Free Webinar: IEPs for Children Severely Affected by DEEs DEE-P Connections is hosting an introductory webinar about Individualized Education Plans (IEPs) on Wednesday, February 26th at 2pm. This webinar, led by Monika Jones, JD CEO of The Brain Recovery Project, is aimed at helping families of children severely affected by DEEs navigate the [...]
DSF is Hiring a Research Coordinator We’re Hiring a Research Coordinator! Are you a scientist who absolutely loves the work that Dravet Syndrome Foundation (DSF) does, but is looking for a change from the lab environment? We have just the opportunity for you! We’re looking for a community-oriented scientist to direct DSF’s research efforts. DSF [...]
Video Education Session February 13, 2020 Dravet Syndrome Foundation is pleased to announce a new, live video education session! On Thursday, February 13, 2020 at 2pm ET, head to RareDiseaseLive to hear a dialogue between medical specialists and families facing Dravet syndrome. Panelists include: Kelly G. Knupp, MD, MSCS Dagmar Amtmann, PhD Nicole [...]
1oth Annual Research Roundtable The Dravet Syndrome Foundation was honored to host our 10th annual Research Roundtable on December 5, 2019 in conjunction with the American Epilepsy Society’s annual meeting in Baltimore, MD. The Roundtable began in 2010 with 10-15 scientists and parents brainstorming how to move Dravet syndrome research forward. Ten years [...]
Birthday Buddies Club Join the DSF Birthday Buddies Club and your child will receive a birthday card and small gift from DSF's mascot, Aurora! Patients of any age may participate, however, at this time, the DSF Birthday Buddies club is only available for Dravet syndrome patients in the United States and the parent [...]
2019 Day of Dravet Registration is Open 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. [...]
Mid-Atlantic Meet & Greet Dravet families in Virginia met for a meet and greet on August 3 to connect and share their stories and experiences. It reaffirmed that they are not alone, and that the Dravet Syndrome Foundation (DSF) was a valuable resource in supporting families and patients. Interested in setting up a [...]
2018-2019 Progress Report In 2018, Dravet Syndrome Foundation (DSF) developed a 5-year strategic plan to articulate the long‐range direction and priorities for our organization. The content for our strategic plan was derived by examining the Dravet syndrome landscape. We listened to a broad range of input from key stakeholders within our community regarding [...]
2019 Day of Dravet Registration is Open 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. [...]
