Mary Chapman, features writer —

Bringing together patients and their families — virtually, this year — the Dravet Syndrome Foundation (DSF) will present its fourth annual Day of Dravet workshop Oct. 17. The free event is an opportunity to learn more about treatment options and the latest Dravet syndrome research, connect…

The Epilepsy Foundation’s Community Day, being held virtually this year, will offer patients, caregivers, and advocates the latest information about epilepsy and an opportunity to connect with others. “Innovation and Action to End Epilepsy,” a free national conference on Aug. 29, will focus on advocacy and a variety…

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. The initial phase of the five-year, $1-million #RAREis Scholarship Fund will include 32 scholarships — each totaling $5,000 —…

In light of the COVID-19 pandemic, there are several ways to get involved virtually to support Dravet Syndrome Awareness Month, observed each June. Organized by the Dravet Syndrome Foundation (DSF), the monthlong event is intended to make this severe type of epilepsy — and the needs of…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…

The National Organization for Rare Disorders (NORD) has opened a financial assistance program for people in rare disease community who are affected by the COVID-19 pandemic in the U.S. Called the NORD COVID-19 Critical Relief Program, the effort will provide up to $1,000 annually to those eligible to…

In a move that will give Dravet syndrome patients easier treatment access, the U.S. Drug Enforcement Administration (DEA) has reclassified Epidiolex (formerly GWP42003-P) as a non-controlled substance. In what the agency called a “descheduling,” the action removes all federally controlled-substance restrictions for the oral cannabidiol (CBD) solution that…

Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, and aims to supports work by researchers and clinicians into a better understanding of and treatments for rare diseases, as well…

An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. 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…

To speed diagnoses and provide free genetic testing for young children in the United States and Canada who have unexplained seizures, BioMarin Pharmaceutical and Invitae have expanded their Behind the Seizure program. New partners in the effort include Biogen, Encoded Therapeutics, Neurogene, Praxis…