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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…
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 the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…
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,…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…
Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…
Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…
Treatment with soticlestat, an inhibitor of cholesterol turnover in the brain, protected against fever-induced seizures in two mouse models of Dravet syndrome, a study has found. In one of the models, the experimental therapy also prevented sudden unexpected death in epilepsy (SUDEP), a rare complication of seizures —…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…
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