Dravet Syndrome News

January 12, 2021January 12, 2021

UN Reclassifies Cannabis in Nod to Plant’s Therapeutic Prospects

After some 59 years, the chief drug policy-making entity of the United Nations (UN) has voted to remove cannabis from a listing of narcotics designated as potentially addictive and dangerous, ... Read more

January 5, 2021January 5, 2021

Tevard, Zogenix Partner to Advance Gene Therapies for Genetic Epilepsies

Dravet Syndrome News

Tevard Biosciences and Zogenix announced entering a collaboration agreement to advance potential gene therapies for genetic epilepsies, including Dravet syndrome. “We are pleased to announce our collaboration with Zogenix, whose ... Read more

December 22, 2020December 22, 2020

Oral Fintepla Approved in Europe as Add-On Seizure Therapy

Dravet Syndrome News

Zogenix’s Fintepla (fenfluramine) has been approved by the European Commission (EC) as an add-on treatment for seizures associated with Dravet syndrome in patients ages 2 and older. With this decision, ... Read more

December 15, 2020December 15, 2020

Epilepsy Genetic Screening Program Can Speed Up Diagnosis of SCN1A-related Diseases

Dravet Syndrome News

A no-cost genetic screening program, sponsored by Stoke Therapeutics, helped speed up molecular diagnosis of SCN1A-related diseases, including Dravet syndrome, by four years in children suspected of having genetic epilepsy, ... Read more

December 8, 2020December 8, 2020

FDA Allows Higher Dose of STK-001 for Adolescents, Children in MONARCH Trial

Dravet Syndrome News

The U.S. Food and Drug Administration (FDA) will allow an additional higher dose of STK-001 to be added to the Phase 1/2a MONARCH trial, which is evaluating the potential therapy’s ... Read more

December 1, 2020December 1, 2020

UK Survey Examines Effects of COVID-19 on Dravet Patients

COVID-19 News, Dravet Syndrome News

While Dravet syndrome patients don’t appear to be at increased risk of severe COVID-19 complications, more study is needed about potentially adverse effects of prolonged social distancing and other preventative ... Read more

November 26, 2020December 28, 2020

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

COVID-19 News, Dravet Syndrome News

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a ... Read more

November 24, 2020November 24, 2020

1st Patient Dosed in Phase 2 Study of EPX-100 for Dravet Syndrome

Dravet Syndrome News

The first patient has been successfully dosed in a Phase 2 clinical trial testing Epigenix Therapeutics’ EPX-100 (clemizole) as an add-on therapy for children with Dravet syndrome. “We are very ... Read more

November 17, 2020November 17, 2020

Specific ICD-10 Codes for Dravet Ultimately Could Improve Patient Outcomes

Dravet Syndrome News

Dravet syndrome now has its own global health statistics codes — known as “ICD-10” codes — that potentially could result in improved patient outcomes and enhanced clinical and scientific knowledge ... Read more

November 10, 2020November 10, 2020

Epilepsy Awareness Month Calls Attention to Seizure Disorders, Dravet, LGS

Dravet Syndrome News

National Epilepsy Awareness Month is underway, with a variety of events and activities aimed at calling attention to diseases such as Dravet and Lennox-Gastaut syndromes, and to epilepsy in general. ... Read more

November 3, 2020November 3, 2020

CHMP Favors Fintepla as Add-on Dravet Treatment Across Europe

Dravet Syndrome News

Fintepla — low-dose oral fenfluramine — moved one step closer to European approval, following a favorable opinion on its use as an add-on treatment for seizures associated with Dravet syndrome in patients ... Read more

October 28, 2020November 30, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Dravet Syndrome News

A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in ... Read more

October 27, 2020October 27, 2020

Fintepla Led to ‘Profound’ Reduction in Seizure Frequency in Young Dravet Patients, Extension Study Shows

Dravet Syndrome News

Long-term treatment with Fintepla can reduce the frequency of seizures in children and adolescents with Dravet syndrome, according to two-year interim data from an open-label extension study. Study findings were presented ... Read more

October 20, 2020October 20, 2020

First Patient Enrolled in Phase 2 Trial of EPX-100, Potential Add-on Therapy for Dravet

Dravet Syndrome News

The first patient has been enrolled in Epygenix Therapeutics’ multicenter Phase 2 clinical trial that will assess the effectiveness and safety of EPX-100 as an add-on therapy in children with ... Read more

October 13, 2020October 13, 2020

Eisai Begins Phase 3 Trial Testing Lorcaserin at Reducing Dravet Seizure Frequency

Dravet Syndrome News

Following consultation with the U.S. Food and Drug Administration (FDA), Eisai has initiated a Phase 3 clinical trial called MOMENTUM 1 to evaluate lorcaserin as a potential treatment for Dravet ... Read more