Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events. The top 50 point-earners will be eligible to win $1,000 to $5,000in  grants, totaling up…

Activities ranging from submitting names for a virtual remembrance wall to swapping out Facebook photo frames are on tap for Dravet Awareness Month, set aside each June to call attention to a severe type of epilepsy that affects an estimated 1 in 15,700 individuals in the U.S. Awareness and…

Ovid Therapeutics has closed an agreement under which Takeda Pharmaceuticals will secure global rights to develop and market the investigational oral therapy soticlestat (previously TAK-935/OV935) for two rare epilepsy syndromes, one of which is Dravet syndrome, the company announced. Takeda had announced the exclusive agreement…

Ataluren, in development by PTC Therapeutics as a possible treatment for Dravet syndrome, showed an acceptable safety profile in a small clinical trial. That trial, conducted at a single site in New York City, involved 15 children with either Dravet syndrome due to mutations in the CDKL5…