Mary Chapman,  features writer—

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…

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…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

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…

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) has launched an initiative across the U.S. Its goal is to establish a Rare Disease Advisory Council (RDAC)…

While Dravet syndrome patients don’t appear to be at increased risk of severe COVID-19 complications, more study is needed about potentially adverse effects of prolonged social distancing and other preventative measures, a Dravet Syndrome UK (DSUK) survey indicates. The report gives a view into the the…

Dravet syndrome now has its own global health statistics codes — known as “ICD-10” codes — that potentially could result in improved patient outcomes and enhanced clinical and scientific knowledge of the genetic disorder. The National Center for Health Statistics has designated what are known as International…

A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be featured on the front cover of an upcoming calendar in the “Same But Different” contest to raise awareness about rare disorders. “A Lovely Day Out in Kew Gardens,”…