Mary Chapman, features writer —

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…

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. More than 65 million individuals globally live with the central nervous system disorder. One-third of those experience…

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 it calls “Newly Diagnosed Patient Kits,” which include tools and materials for care management. To get the kits,…

To establish a public health infrastructure that advances health equity and improves the lives of people with epilepsy, the Centers for Disease Control and Prevention (CDC) has awarded $17.5 million to the Epilepsy Foundation and its partners. The five-year award will support efforts by these organizations to establish and sustain…

A total of $50,000 has been raised though a Zogenix photo contest to support the Dravet Syndrome Foundation (DSF) and the Epilepsy Foundation. The company’s donation, to be equally divided, was made possible through the people who took part in the Fintepla Photo Diary, a Zogenix effort…

Siblings of children with Dravet syndrome often grow up “in an environment permeated by stress, anxiety, and fear for their loved one’s well-being,” according to the biopharmaceutical company Zogenix. Now, a new online resource is available to help support the brothers and sisters of patients with severe rare epilepsies.

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…