Surgery & Procedures

By |2021-09-15T09:44:22-05:00September 16th, 2021|Categories: Research / Treatments|

Surgery & Procedures in Dravet Syndrome Patients with Dravet syndrome often require a surgery or other invasive procedure at some point in their life. While there are no specific surgical procedures that are specifically required due to the diagnosis of Dravet syndrome, there are some procedures that occur more commonly, including: feeding tube [...]

COVID-19 Vaccine Survey Results

By |2021-08-16T07:52:34-05:00August 16th, 2021|Categories: Research / Treatments|

Dravet Syndrome and COVID-19 Vaccination As the COVID-19 pandemic continues, vaccination has become a major tool in combating the spread and mitigating the symptomatic infections caused by the novel coronavirus. Vaccination can be a topic of particular concern for individuals with Dravet syndrome (DS) and their families given that vaccines are a common [...]

Adult Neurology Training

By |2021-08-16T11:19:57-05:00August 16th, 2021|Categories: Research / Treatments|

Education Participation Survey There is currently suboptimal exposure to Dravet syndrome in adult neurology training. We believe exposure to Dravet syndrome should be optimized in adult neurology residency training since adult providers will be caring for adults with Dravet. In an attempt to address this educational gap, DSF invites you to join an [...]

Call for Research Proposals

By |2021-06-17T11:20:04-05:00June 17th, 2021|Categories: Research / Treatments|

Applications Due September 10, 2021 The 2021 DSF Research Grant Program is open! Our Research Grant Program was established in 2010 to support investigator sponsored research in the field of Dravet syndrome, which historically has been critically underfunded. Our goal is to support and promote innovative approaches in Dravet syndrome research across disciplines [...]

Fintepla Global Access

By |2021-05-17T14:53:08-05:00May 17th, 2021|Categories: Research / Treatments|

Global Access Program for FINTEPLA® (Fenfluramine) Oral Solution Zogenix Launches Global Access Program for FINTEPLA® (Fenfluramine) Oral Solution Zogenix is committed to providing access to and supporting the safe and appropriate use of FINTEPLA (fenfluramine) in countries where it is not yet approved. As an important first step, they have started the “Zogenix [...]

New Clinical Study

By |2021-04-16T08:08:53-05:00April 19th, 2021|Categories: Research / Treatments|

Momentum 1 Phase 3 Clinical Trial New Clinical Study Offers Change to Further Research in Dravet Syndrome If your child or 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 significantly impact quality [...]

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 [...]

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