The United Porphyrias Association (UPA) and the nonprofit advocacy organization Shadow Jumpers are teaming up to give 20…
Articles by Mary Chapman
For this year’s Porphyria Awareness Week (PAW), running April 15-22, the American Porphyria Foundation (APF) is putting a spotlight…
The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person…
Note: This story was updated April 1, 2022, to add events being held by Global Porphyria Advocacy Coalition, the…
Raising awareness about acute hepatic porphyria (AHP) and helping to shorten the time it takes to get diagnosed with…
The porphyria community has a new patient advocacy organization in the United Porphyrias Association (UPA), a newly launched nonprofit…
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…
Activities are afoot to mark Porphyria Awareness Week — taking place April 10–17 this year — set aside annually to…