Author Archives: Mary Chapman

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…

Proposed Maryland Law Would Create ‘Seizure Safe Schools’

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…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

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…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

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…

NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

UN Reclassifies Cannabis in Nod to Plant’s Therapeutic Prospects

After some 59 years, the chief drug policy-making entity of the United Nations (UN) has voted to remove cannabis from a listing of narcotics designated as potentially addictive and dangerous, and having little to no therapeutic use. The reclassification by the Commission on Narcotic Drugs (CND) opens the door to…