Dravet Syndrome News

January 11, 2022January 11, 2022

Zogenix Seeks Marketing Approval of Fintepla for Seizures in Japan

Zogenix is seeking approval to market Fintepla (fenfluramine) in Japan as a treatment for epileptic seizures associated with Dravet syndrome. The company’s new drug application will be reviewed and decided ... Read more

January 4, 2022January 4, 2022

UK Surveys Assess Impact of COVID-19 and Its Vaccines

COVID-19 News, Dravet Syndrome News

Vaccines for COVID-19 are generally safe for children with Dravet syndrome, and are unlikely to cause an increase in the frequency of seizures, whereas COVID-19-like disease often increases seizure frequency, ... Read more

December 28, 2021December 28, 2021

Prepare to Light Up Buildings for Rare Disease Day 2022

Dravet Syndrome News

The National Organization for Rare Disorders (NORD) asks Americans to plan ahead to participate in the Light Up for Rare campaign to raise awareness of rare diseases. NORD is the ... Read more

December 21, 2021December 21, 2021

STK-001 Seen to Reduce Seizures in Children With Severe Dravet

Dravet Syndrome News

Single and multiple doses of Stoke Therapeutics’ investigational therapy STK-001 were well-tolerated and led to a significant reduction in the frequency of convulsive seizures among children and adolescents with Dravet ... Read more

December 14, 2021December 14, 2021

ReS3-T Accepted Into Epilepsy Therapy Screening Program

Dravet Syndrome News

ReS3-T, an investigational medicine developed by reMynd for therapy-resistant epilepsies such as Dravet syndrome, has been accepted into the National Institute of Neurological Disorders and Stroke (NINDS) Epilepsy Therapy Screening Program ... Read more

December 7, 2021December 7, 2021

Virpax to Develop CBD Nasal Spray for Epilepsy

Dravet Syndrome News

Virpax Pharmaceuticals has acquired exclusive worldwide rights from Nanomerics to develop a nasal spray of cannabidiol to treat epilepsy in adults and children, including those with Dravet syndrome. Under the ... Read more

November 30, 2021November 30, 2021

Trial Data Show STK-001 Safe, Likely Effective at Reducing Seizures

Dravet Syndrome News

Stoke Therapeutics’ investigational therapy STK-001 is generally safe and results in a trend toward a reduction in seizure frequency in children and adolescents with Dravet syndrome, according to interim data ... Read more

November 23, 2021November 23, 2021

Anti-seizure Therapy STK-001 Safe, Showing Hints of Efficacy in Trial

Dravet Syndrome News

Treatment with STK-001, Stoke Therapeutics‘ investigational therapy for Dravet syndrome, has so far raised no safety concerns among children taking part in the ongoing Phase 1/2a MONARCH clinical trial, according ... Read more

November 16, 2021November 16, 2021

Anti-seizure Therapy NT102 Wins FDA’s Orphan Drug Status

Dravet Syndrome News

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Neuroene Therapeutics‘ NT102, a potential anti-seizure therapy for Dravet syndrome. NT102, given orally, has been shown to prevent seizures in ... Read more

November 9, 2021November 9, 2021

Epilepsy Foundation Marks Second Year of ‘Seizure Safe Schools’

Dravet Syndrome News

In the two years since the Epilepsy Foundation launched its nationwide Seizure Safe Schools initiative, a dozen states have enacted legislation aimed at providing a safe school environment for the approximately ... Read more

November 2, 2021November 2, 2021

Don the Purple for Epilepsy Awareness in November

Dravet Syndrome News

Sporting purple gear and sharing personal stories, supporters are observing National Epilepsy Awareness Month in November to call attention to epilepsy and associated disorders, such as Dravet and Lennox-Gastaut syndromes. ... Read more

October 26, 2021October 26, 2021

RARE-X, Global Genes to Help Collect Rare Disease Patient Data

Dravet Syndrome News

In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the ... Read more

October 19, 2021October 19, 2021

Global Genes, Diversity Coalition Team Up to Advance Health Equity

Dravet Syndrome News

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, ... Read more

October 19, 2021October 19, 2021

Dravet Syndrome Foundation Offers ‘Newly Diagnosed Patient Kits’

Dravet Syndrome News

There’s a new, free informational resource available for the families of children in the U.S. who have been newly diagnosed with Dravet syndrome. The Dravet Syndrome Foundation has created what ... Read more

October 12, 2021October 12, 2021

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

Dravet Syndrome News

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC ... Read more