The International Porphyrias Symposium 2023, where experts discuss the latest research into porphyria, will be held later this week and will feature a day dedicated to people with the disease. The symposium, which is designed for clinicians who care for people with porphyria and scientists conducting research related…
When my youngest son, Brady, was diagnosed with erythropoietic protoporphyria (EPP) at age 3, it marked the beginning of a long and challenging journey. It had taken countless doctor appointments and a tremendous amount of persistence just to identify the condition. But as a parent and caregiver, I…
The presentation began and I found my seat. Looking around the meeting room, I knew that every single person was there because of a shared interest in my rare disease. Mind blown. Thanks to a scholarship from the National Organization for Rare Disorders’ Rare Disease Educational Support Program, I…
Experts will discuss the latest research related to porphyria, as well as current and emerging treatments and management strategies, at an upcoming symposium. The event will include a free patient day, open to both in-person and virtual attendees. “The Porphyrias Symposium … will bring together Porphyrias experts, treating…
Get regular updates to your inbox.