Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The…
Articles by Mary Chapman
International Epilepsy Day (IED), falling on Feb. 8 this year, calls attention to the needs of the roughly 50 million…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “…
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and…
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to…
After some 59 years, the chief drug policy-making entity of the United Nations (UN) has voted to remove cannabis from…
To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients…
While Dravet syndrome patients don’t appear to be at increased risk of severe COVID-19 complications, more study is…
Dravet syndrome now has its own global health statistics codes — known as “ICD-10” codes — that potentially could…
A photo of a bespectacled young boy, his red baseball cap slightly askew as he  enjoys time outside, will be…