Note: This story has been updated March 6, 2025, to correct a quote from Mindy Henderson, MDA vice president of…
Articles by Mary Chapman
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
If you have late-onset Pompe disease (LOPD) and are employed, or are considering employment, you’re likely going to need…
While the effects of late-onset Pompe disease on everyday life are far-reaching, there are steps you can take…
If you have a chronic disease such as late-onset Pompe disease, a Japanese concept called shoshin may help you…
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1,…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “…