News

Epilepsy Foundation Marks Second Year of ‘Seizure Safe Schools’

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…

Don the Purple for Epilepsy Awareness in November

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…

RARE-X, Global Genes to Help Collect Rare Disease Patient Data

In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the most of that information. “Patient data is perhaps the most valuable asset rare disease communities can leverage to…

Global Genes, Diversity Coalition Team Up to Advance Health Equity

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

Rare Disease Diversity Coalition Awards $600K to Combat Disparities

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…

$17.5M CDC Award to Help Develop Public Health System for Epilepsy

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…

‘Rare’ Documentary in Kickstarter Campaign to Raise $45K by Oct. 28

A crowdfunding campaign aims to raise $45,000 to support “Rare,” a documentary film featuring the struggles and achievements of people living with rare diseases and their families. Sweis Entertainment and Digital Cave Media launched the campaign — allowing filmmakers to finish producing and to release the documentary — on Kickstarter.

New Data-sharing Program Aims to Speed Innovation in Rare Diseases

A new U.S. initiative called Rare Disease Cures Accelerator–Data and Analytics Platform — dubbed RDCA–DAP — aims to accelerate treatment innovation across rare diseases by sharing existing patient data and promoting the standardization of new data collection. Launched during a virtual workshop in September, the U.S. Food and Drug…