A portrait of Morgan McKillop, a pre-teen who has erythropoietic protoporphyria (EPP) and is an active member of the…
Articles by Mary Chapman
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1,…
Living with a rare and chronic disease such as porphyria, with its multitude of symptoms, can make it hard to…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The…
If you or a family member has a rare disease such as porphyria, it may help to plug into health…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “…
It is important to understand what are the potential triggers of acute porphyria attacks. That way, you may be…
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…
People with porphyria often have trouble sleeping. Because a good night’s sleep is vital to physical and mental health, as…