Docuseries Earns Award for Depicting Lives of MG Patients
Digital-native marketing agency closerlook has garnered a bronze Pharma Lion for a documentary series that depicts life with…
Articles by Mary Chapman
Centogene Sets Mission to Cure 100 Rare Diseases in Next 10 Years
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases…
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes…
Get Ready for NORD’s Patient and Family Forum, Set for June 26-27
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
MGFA Events Set to ‘Turn Awareness Into Action’ Throughout June
From contributing to an interactive activities map to taking up challenges and advocating for local proclamations, supporters are set to…
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,…
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…
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 “…
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…
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to…