New ICD-10 Codes

By |2021-03-16T15:28:44-05:00March 17th, 2021|Categories: Research / Treatments|

New ICD-10 Codes for Dravet Syndrome New ICD-10 codes for Dravet syndrome are now available to assure proper medical coding and help improve diagnosis, care, surveillance, research, and access for patients. ICD-10 codes are used by medical providers to track health statistics about disease and to assist in billing. It is important for a [...]

New Study for Adults

By |2021-03-16T15:28:24-05:00March 17th, 2021|Categories: Research / Treatments|

New Study Opportunity for Adults with Dravet Syndrome Dr. Danielle Andrade, an adult neurologist who is an expert in Dravet syndrome (DS), is currently conducting a study of adults with DS to improve the understanding of seizures, symptoms, comorbidities, and daily life as patients age. Part of the study is examining patients that visit [...]

Grief and Death Webinar

By |2021-02-26T16:33:44-05:00February 16th, 2021|Categories: Research / Treatments|

Free Webinar: PAME - Grief and Death in Epilepsy: Learning From Loss Grief and Death in Epilepsy: Learning From Loss Tuesday, March 2, 2021 at 2 pm Central Time Register Here Mortality in epilepsy is impacted by factors that are not often present in other disease states, including the suddenness of death, and [...]

Momentum 1 Research Study

By |2021-02-16T09:41:59-05:00February 16th, 2021|Categories: Research / Treatments|

Momentum 1 Phase 3 Clinical Trial New Research Study Offers Anyone Ages Two and Up a Chance to Help Those with Dravet Syndrome If a loved one has Dravet syndrome, you know that it affects the whole family. Dravet syndrome, a lifelong disease marked by prolonged, frequent seizures, requires constant care and can [...]

Curing the Epilepsies

By |2021-01-20T09:38:20-05:00January 20th, 2021|Categories: Research / Treatments|

Curing the Epilepsies 2021: Setting Research Priorities On January 5-7, 2021, the NIH/NINDS (National Institute of Health/ National Institute of Neurological Disorders and Stroke) held the “Curing the Epilepsies 2021: Setting Research Priorities” conference in a virtual format. The goal of the conference was to guide updates to the current Epilepsy Research Benchmarks and Transformative [...]

2020 Grant Awards

By |2021-03-15T10:52:53-05:00December 15th, 2020|Categories: Research / Treatments|

2020 DSF Grant Awardees DSF is dedicated to funding the highest caliber research on Dravet syndrome and associated epilepsies. Our focus is on research projects that will find new treatments and improve the quality of life for those living with an ion channel epilepsy. We place a high priority on funding research that [...]

AES Meeting Summary

By |2020-12-15T11:55:33-05:00December 15th, 2020|Categories: Research / Treatments|

AES 2020 Meeting Summary On December 4-8th, 2020, the American Epilepsy Society (AES) held its annual conference to bring together clinicians and scientists on the cutting edge of epilepsy research. This year had a multitude of presentations related to Dravet syndrome, making for an exciting few days focused on what we have learned [...]

Interactive Education

By |2020-11-16T13:59:28-05:00November 16th, 2020|Categories: Research / Treatments|

Dravet Syndrome and Caregiving: Your Voices Heard and Answered Mark your calendar for Monday, November 23 at 12:00 PM EST! Dravet Syndrome and Caregiving: Your Voices Heard and Answered We are excited to announce a new live, interactive, virtual education program created for caregivers of children or adults with Dravet Syndrome. This program [...]

2020 PAME Meeting

By |2020-11-11T14:37:37-05:00November 16th, 2020|Categories: Research / Treatments|

Partners Against Mortality in Epilepsy Meeting 2020 PAME – Even a Pandemic Can’t Stop the Quest Monday, December 7, 2020 2:30 pm – 4:30 pm Eastern Partners Against Mortality in Epilepsy (PAME) is a collaboration among health care providers, clinical researchers, basic scientists, public health officials, patient advocates, caregivers, bereaved families, and people [...]

EPX-100 Phase II Enrollment

By |2020-09-15T10:40:46-05:00September 15th, 2020|Categories: Research / Treatments|

EPX-100 Phase II Clinical Trial Enrollment Epygenix Therapeutics invites children with Dravet syndrome to participate in a Phase II Clinical Trial In a Phase II, multicenter, randomized, double-blind, placebo-controlled study Epygenix will test the investigational drug, EPX-100 (Clemizole Hydrochloride, oral solution), as an adjunctive therapy for children with Dravet syndrome (2-17 years old) [...]

Go to Top