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!
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Join UPA’s Patient Artist Team!
You’re invited to join UPA’s team of patient artists called Unseen Warriors by UPA to highlight the importance of research and advancing treatments for multiple rare diseases. The challenge is being hosted by the NIH.
Aida's Art: Painting Through Porphyria with Strength and Purpose
Read how Aida uses art to navigate life with Congenital Erythropyietic Porphyria (CEP). Discover her portraits of Jason Momoa and Jack Sparrow, and learn how painting gives her courage, purpose, and a voice.
Theme Parks and Porphyria: Sean’s Story of Flexibility, Fun, and Flare-Ups at Universal
UPA Ambassador Sean Albright shares his experience visiting Universal Studios while managing Variegate Porphyria. From smart prep to a sudden flare, Sean shows how adapting plans can still lead to a great time.
The burden of EPP: Putting numbers to the realities of daily life
This study asked adolescents and adults with erythropoietic protoporphyria (EPP) or X-linked protoporphyria (XLP) how sunlight affects their skin, daily life, emotions, school and work, and healthcare use. The goal was to put numbers to what many already live every day.
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.
What Family Members of AHP Patients Should Know: High Levels, No Symptoms
This research looked at close relatives of people with acute hepatic porphyria (AHP). The relatives had never been tested or had symptoms of porphyria, but the study found that more than half of them had the gene for porphyria and a significant number had elevated levels of urine PBG and ALA.
When Accolades Fade: Discovering True Worth Through Porphyria
A powerful personal journey of living with acute intermittent porphyria (AIP)—and discovering true worth beyond accolades. If porphyria has changed your life, this story is for you.
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.
Living with EPP and Liver Disease: What We Learned from Patients
This study looked at the impact of liver disease on people with EPP by comparing the experiences of EPP patients with and without liver disease.
Promise of ‘All Fun and No Sun’ Gives Photosensitive Children the Chance to Enjoy Camp Experiences
Victory Junction, a year-round camp dedicated to enriching the lives of children with complex medical and physical conditions, will host the second annual Sun Escape Weekend in collaboration with Shadow Jumpers and The United Porphyrias Association May 1-4, 2025.
Recommendations for Hemin Preparation and Infusion
Question: Is there a way to make Panhematin infusions more comfortable?
Meet Lina Rebeiz, Porphyria Community Builder
"Things are so different once you meet other patients with porphyria"
Porphyrins and Fluorescence
Question: Does porphyrin in stool fluoresce under UV/Wood light?
Living in the Shadows: Elsie’s Journey with Congenital Erythropoietic Porphyria
The world isn’t designed for people with rare diseases, and convincing others that we actually need the support we ask for is a battle in itself.
Statement from the American Porphyria Expert Collaborative
The American Porphyria Expert Collaborative (APEX) has issued a statement advocating for consistent and accessible porphyria testing to be available nationwide.
Understanding the Emotional Toll of Being a Caregiver for a Loved One with Porphyria
Being a caregiver is one of the most heart-wrenching and overwhelming roles a person can take on. The emotional and physical toll it exacts on both you and your loved one is often unspoken—yet, it profoundly shapes your mental and emotional landscape.
Meet Dr. Robert Desnick, Porphyria Expert
The Porphyrias Consortium allowed us to train the next generation of porphyria experts. We’ve worked so well together to carry out basic and clinical research, including multiple clinical treatment trials, that we wanted to continue our excellent collaborations and research.
How Positive Experiences Can Exacerbate Acute Porphyria: Managing Stress and Symptoms
A few weeks ago, my husband Wilson and I celebrated our 25th wedding anniversary with a wedding vows renewal. While it was a fun and memorable celebration weekend, it left me feeling activated by the stress of it.
Treatments for Congenital Erythropoietic Porphyria
Question: When will we get a treatment for Congenital Erythropoietic Porphyria (CEP)?
Living with Erythropoietic Protoporphyria (EPP): A Personal Journey
“I Have Never Seen Anyone Washing Windows in the Rain”. Before being diagnosed with EPP, my next door neighbor said these exact words to me.