News

Caregivers of children with Dravet syndrome who are taking Fintepla (fenfluramine) report sustained seizure reductions and quality-of-life improvements, among other benefits, according to a recent study. These findings were presented as a poster titled “Caregivers’ Perspectives on the Long-term Seizure- and Non-seizure-related Benefits of Fenfluramine…

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…

Vaccines against COVID-19 appear to be safe and well-tolerated in patients with Dravet syndrome, a U.K. survey indicates. A brief report on the survey’s top results was announced recently by Dravet Syndrome UK. The COVID-19 pandemic has had an incalculable impact across the world. Recently, several…

Takeda Pharmaceuticals has acquired the global rights to develop and market the investigational oral therapy soticlestat (OV935/TAK-935) for developmental and epileptic encephalopathies, including Dravet syndrome, the company has announced. Soticlestat was originally developed by Takeda and Ovid Therapeutics, after the companies entered into a collaboration in 2017.

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

In its 13th year, the nonprofit Dravet Syndrome UK (DSUK) — which seeks to improve the lives of those affected by the epilepsy disorder — has introduced its first strategic plan for supporting patients and their families through research, awareness, and education. The five-year strategy outlines how the DSUK…

The Dravet Syndrome Foundation (DSF) is promoting awareness of the new global health statistics codes now in effect for Dravet syndrome. Known as “ICD-10” codes, the designations could bring about improved patient outcomes and scientific knowledge of this severe type of epilepsy. The DSF is encouraging those…

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, blue, and purple lights side-by-side? These are the colors most often used to represent Rare Disease Day. This…

The risk of severe COVID-19 outcomes does not appear to increase in people with Dravet syndrome, although they still may need additional medical attention, according to the results of a recent survey in the U.K. Results of the survey, “The impact of COVID‐19 in Dravet syndrome:…

A $200,000 Comcast NBCUniversal grant has been awarded to The Arc to increase access to educational resources for students of color and economically disadvantaged youngsters with intellectual and developmental disabilities (IDD), which can include Dravet syndrome. The award will fund the organization’s community-based The Arc@School initiative to expand its resources…