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. [...]
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 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 [...]
2019 Day of Dravet 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. Participants come away [...]
New Initiative: Dravet Dialogues DSF is excited to launch Dravet Dialogues, a live, interactive, virtual series of support group meetings taking place March-May 2019. These sessions give parents a chance to connect with community experts on a variety of topics while interacting in real-time with fellow parents and caregivers. We hope that through these [...]
New Support Group: Caregivers of Adults (17+) DSF is excited to launch a support group specifically for the caregivers of adults (17+) with Dravet syndrome. We understand that the needs of this community are unique and we hope this space will provide a safe-haven for parents and caregivers to connect, share stories, and [...]
