Mary Chapman, features writer —

The United Porphyrias Association (UPA) and the nonprofit advocacy organization Shadow Jumpers are teaming up to give 20 U.S. children with sun sensitivity conditions, along with their families, a safe and special camp experience this May. The event, dubbed Sun Escape Weekend, will allow these children, ages 6-16,…

For this year’s Porphyria Awareness Week (PAW), running April 15-22, the American Porphyria Foundation (APF) is putting a spotlight on those individuals with a rare genetic disease that falls under the disorder’s umbrella. The goal is to increase awareness of porphyria among the public, as well as advocate…

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

Note: This story was updated April 1, 2022, to add events being held by Global Porphyria Advocacy Coalition, the umbrella organization for porphyria patient advocacy organizations. From hosting film watch parties to posting photos of pets, supporters are set to mark Porphyria Awareness Week (PAW), observed April 2–9 this…

Raising awareness about acute hepatic porphyria (AHP) and helping to shorten the time it takes to get diagnosed with the rare disease are the goals of a new documentary by Alnylam Pharmaceuticals. The film, “Two of Me: Living with Porphyria,” chronicles the lives of seven people from different…

The porphyria community has a new patient advocacy organization in the United Porphyrias Association (UPA), a newly launched nonprofit that seeks to advance disease awareness, as well as research and treatment development. The Maryland-based organization will strive to enhance patients’ lives through improved diagnostics, porphyria management, and an emphasis…

At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…

To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

Activities are afoot to mark Porphyria Awareness Week — taking place April 10–17 this year — set aside annually to call attention to this group of inherited disorders that affect an estimated 1 in 500 to 1 in 50,000 individuals globally. Supporters are encouraged to engage in Zoom sessions and…