Mary Chapman, features writer —

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

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…

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…

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…

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…

If a Maryland bill called Brynleigh’s Act becomes law, the state will join five others — all of which have passed “seizure safe schools” measures — in making sure every school is equipped with the tools necessary to provide a safe learning environment for students with epilepsy. The law…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

International Epilepsy Day (IED), falling on Feb. 8 this year, calls attention to the needs of the roughly 50 million people globally who are affected by the brain disorder. “This is a day for everyone, no matter where you are, no matter how small your group or large your area,…

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…