Mary Chapman, features writer —

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 Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

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 type of epilepsy and the 1 in 20,000 to 40,000 individuals globally it is thought to affect. International Dravet…

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 taken with other anti-seizure therapies. Called the Skyline study, the trial (NCT04940624) will test soticlestat as an…

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 epileptic condition such as Dravet syndrome have a safe school environment. In recent weeks, Utah and Florida enacted…

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 syndrome, have a safe school environment, bringing to 14 the number of states that now have Seizure Safe Schools.

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 stigma — through 2031. Officially called the Draft Intersectoral Global Action Plan on Epilepsy and Other Disorders…

The Epilepsy Foundation has launched a free mobile app called Nile as a self-management healthcare tool to help people with epilepsy, including those with disorders such as Dravet syndrome. It replaces the foundation’s My Seizure Diary application, which for 15 years has helped patients to monitor and track seizures,…

On the second Monday of every February, International Epilepsy Day supporters all over the world bring attention to the challenges and needs of the epilepsy community. This year, the event falls on Feb. 14. Participants in more than 130 countries are poised to mark the day — from sharing…

The Epilepsy Foundation’s Walk to END EPILEPSY fundraiser series returns in person this spring, along with its 2.6-Million-Mile-Challenge. The “Walk” series opens in April with a goal of raising $1,750,000 to help improve the lives of the 3.4 million U.S. residents thought to live with epilepsy, including those…

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 470,000 children and teens in the U.S. who have an epileptic condition, including Dravet syndrome. The initiative…