Spotlight Porphyria
Welcome to Spotlight Porphyria where we feature all things porphyria! Including:
Porphyria Voices shares experiences, insights, and advice from the porphyria community.
What's UP Doc? Where porphyria experts take your questions.
Summing UP explains the latest research in easy-to-understand summaries
Meet your experts and advocates where we meet the people changing the world for porphyria.
…and more!
Join us to never miss a feature.
Search the blog
Back to School With Porphyria: How a 504 Plan or IEP Can Help
Molly shares how 504 Plans and IEPs can support students with porphyria at school, plus the accommodations that have helped them manage EPP safely.
“It’s Not About Fitting In, It’s About Not Standing Out”: Growing Up With EPP
Cheyenne shares what it’s like growing up with EPP, facing bullying, navigating school, sun protection, and the emotional challenges of feeling different.
Safe Summer Travel with Cutaneous Porphyria: Sun-Avoidance Strategies That Work
Need to avoid the sun? Your fellow porphyria patients share their best tips and tricks for making the most of summer holidays when you have a cutaneous porphyria.
Spring Sun Safety: Essential Sun Protection Tips for Cutaneous Porphyria Patients
Discover science-backed sun protection strategies for cutaneous porphyria (EPP, VP, PCT, CEP & HCP) this spring. Learn about UPF clothing, safe sunscreens, and smart sunlight avoidance techniques.