Author Archives: Mary Chapman

New Program Supports Siblings of Rare Epilepsy Patients

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.

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

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…

Zogenix Opens Photo Contest to Benefit Advocacy Groups

The biopharmaceutical company Zogenix is introducing a Dravet syndrome community photo-sharing campaign and contest to benefit the Dravet Syndrome Foundation and the Epilepsy Foundation. U.S. families of Dravet patients whose seizures are treated with Fintepla (fenfluramine) — an add-on therapy developed by Zogenix — may enter the…

Foundation Promoting New Dravet ICD-10 Codes

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…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…