Dravet Syndrome News

June 14, 2022June 14, 2022

Benzodiazepines Treat Most Status Epilepticus Cases in 10 Children

Anticonvulsant therapies in the benzodiazepine class successfully suppressed nearly 62% of all episodes of status epilepticus in children with Dravet syndrome, a study reported, whereas second-line treatments were required in the remaining cases. ... Read more

June 7, 2022June 7, 2022

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

Dravet Syndrome News

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in ... Read more

May 31, 2022June 1, 2022

Educational Events on Tap to Mark Dravet Awareness Month and Day

Dravet Syndrome News

From remembering those lost to Dravet syndrome to sharing patient stories, supporters are gearing up to mark Dravet Syndrome Awareness Month, observed each June to call attention to this severe ... Read more

May 24, 2022May 24, 2022

Skyline Study to Test Soticlestat Safety, Efficacy in Patients Ages 2–21

Dravet Syndrome News

A Phase 3 clinical trial is recruiting Dravet syndrome patients between the ages of 2 and 21 to assess the effectiveness, safety, and tolerability of the investigational treatment soticlestat when ... Read more

May 17, 2022May 17, 2022

Walking Ability Found to Worsen With Age in Adults With Dravet

Dravet Syndrome News

Adults with Dravet syndrome commonly experience walking difficulties that tend to worsen with age, a small study reports. “In this study, it was observed that gait parameters and parkinsonian symptoms ... Read more

May 10, 2022May 10, 2022

Inhibitory Cells Can’t Send Signals to Neighboring Cells in Dravet Mice

Dravet Syndrome News

A type of brain nerve cells, called parvalbumin-expressing (PV) interneurons, was able to generate electrical signals in a mouse model of Dravet syndrome, but failed to properly transmit them to neighboring ... Read more

May 3, 2022May 3, 2022

With ‘Brynleigh’s Act’ Maryland Becomes 15th ‘Seizure Safe’ State

Dravet Syndrome News

With the signing into law of Brynleigh’s Act by Gov. Larry Hogan, Maryland has become the 15th state to pass legislation that ensures that children and teens who have an ... Read more

April 29, 2022April 29, 2022

Organizations Rally to Help Ukrainian Rare Disease Patients

Dravet Syndrome News

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ... Read more

April 26, 2022April 26, 2022

Cannabidiol Precursor Results in Anti-seizure Effects in Early Study

Dravet Syndrome News

Olivetolic acid, a precursor of cannabidiol (CBD), resulted in protective effects against fever-induced seizures in a mouse model of Dravet syndrome, a study shows. These effects were comparable to those ... Read more

April 21, 2022April 21, 2022

Europe Awaits Proposed New Framework for Sharing Health Data

Dravet Syndrome News

The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health ... Read more

April 19, 2022April 19, 2022

Preclinical Results Pave Way for Human Trial of BMB-101 Oral Therapy

Dravet Syndrome News

Nearly one month of repeated dosing of BMB-101, Bright Minds Biosciences’ experimental oral therapy for Dravet syndrome, was found to be safe and well-tolerated in mice and dogs. These were ... Read more

April 12, 2022April 12, 2022

Telehealth Added to Latest Digital-friendly NORD State Report Card

Dravet Syndrome News

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues ... Read more

April 5, 2022April 5, 2022

Utah and Florida Are the Latest To Enact ‘Seizure Safe Schools’ Laws

Dravet Syndrome News

Utah and Florida are the latest states to enact legislation aimed at ensuring that about 470,000 children and teens in the U.S. who have an epileptic disorder, such as Dravet ... Read more

March 29, 2022March 29, 2022

WHO Sets Global Action Plan Through 2031 for Epilepsy Disorders

Dravet Syndrome News

The World Health Organization (WHO) has issued a sweeping global draft action plan for epilepsy and related disorders, including Dravet syndrome, that outlines goals — including reducing death rates and ... Read more

March 25, 2022March 25, 2022

Increased Education Crucial to Improving Rare Disease Care, Survey Finds

Dravet Syndrome News

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over ... Read more