Research Coordinator

By |2020-01-22T19:29:02-05:00January 15th, 2020|Categories: DSF Programs|

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

By |2020-01-15T11:44:44-05:00January 15th, 2020|Categories: DSF Programs|

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 [...]

Research Roundtable

By |2019-12-16T14:52:46-05:00December 17th, 2019|Categories: DSF Programs|

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

By |2019-11-14T08:33:33-05:00November 15th, 2019|Categories: DSF Programs|

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 [...]

Day of Dravet Registration

By |2019-10-16T14:38:42-05:00October 16th, 2019|Categories: DSF Programs|

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. [...]

Caregiver Connect Grants

By |2019-09-13T11:43:32-05:00September 15th, 2019|Categories: DSF Programs|

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 [...]

Strategic Plan Update

By |2019-09-13T11:32:14-05:00September 15th, 2019|Categories: DSF Programs|

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 [...]

Day of Dravet Registration

By |2019-08-12T15:30:20-05:00August 15th, 2019|Categories: DSF Programs|

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. [...]

Patient Voice Webinar

By |2019-07-16T07:39:58-05:00July 16th, 2019|Categories: DSF Programs|

Patient Voice in the Development of Research Webinar Dravet Syndrome Foundation (DSF) has developed a webinar because there is an increasing recognition of the importance of the involvement of patients in the development of research that will impact their disease state. In 2018, DSF, received a generous grant from the Patient Centered Outcomes [...]

Caregiver Connect

By |2019-06-13T21:25:33-05:00June 15th, 2019|Categories: DSF Programs|

Caregiver Connect Launch DSF is pleased to announce Caregiver Connect – a new multi-year collaboration between DSF and Greenwich Biosciences for caregivers and families. Caregiver Connect is a unique multi-faceted program with a focus on helping families manage the caregiver burden and stress that accompanies caring for a child with a rare epilepsy [...]