• Everything you need for your porphyria journey

    Begin

  • Get your porphyria questions answered

    On Saturday, November 15, Dr. Bruce Wang, porphyria expert will be taking your questions live on the Porphyria Together Facebook Group!

    Click Here

  • Apply for Sun Escape 2026

    Join us April 30-May 4, 2026 for a weekend of All Fun and No Sun! Applications for photosensitive families and volunteers closes on December 6, 2025.

    Learn More

  • Get your porphyria merch!

    Help raise porphyria awareness and support United Porphyrias Association with our curated selection of accessories and clothing.

    Visit our Store

  • Porphyria support across Latin America

    Porfirias Unidas Latinoamerica is a new network built by and for patients that truly understands what it means to live with porphyria in Latin America.

    www.porfiria.lat

  • Get the latest!

    Join the United Porphyrias Assocation mailing list for the latest porphyria research and news, community updates and more!

    Sign UP

  • Bitopertin for EPP & XLP

    Learn more about the ongoing phase 3 clinical trial!

    Learn more

UNITED PORPHYRIAS ASSOCIATION

We are committed to improving the quality of life of the porphyria community and focused on advancing disease awareness, research, and therapies for all the porphyrias.

Quick Access Links

Drug Safety Database
Acute Hepatic Porphyria Treatment

  • Seeking a Diagnosis

    Think you may have porphyria? Learn how porphyria is diagnosed and how you can access testing.

    Learn More

  • Living with Porphyria

    Porphyria can impact every part of your life. Learn about the resources and supports that are available to you.

    Learn more
  • Light purple outline of a doctor with stethoscope

    Treating Porphyria

    Have a patient with porphyria? In-depth resources on the diagnosis, treatment and management of the porphyrias.

    Learn more

UPcoming Events

Events
What’s UP Doc? Live with Dr. Bruce Wang
Nov 15
What’s UP Doc? Live with Dr. Bruce Wang

Dr. Bruce Wang, porphyria expert will be taking your questions live on Facebook.

Liver Transplants & Porphyria
Nov 16
Liver Transplants & Porphyria

Join porphyria expert Dr. Amy Dickey to discuss when a transplant may be considered, what the process involves, potential risks and outcomes, and life after surgery. You’ll also hear directly from patients who have undergone transplantation as they share their personal experiences and perspectives. 

The Latest UPdates

Featured
Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis
Finding Strength in Small Steps: A Patient's Guide to Recovery from Paralysis

Maria Paula Galvis, an AIP patient from Colombia, shares her heartfelt advice on recovering from paralysis. Learn how to cultivate the right mindset, celebrate small wins, and listen to your body during rehabilitation.

Join UPA’s Patient Artist Team!
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
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
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.

Learn more about your porphyria

Acute Hepatic Porphyrias

Acute Intermittent Porphyria (AIP)
ALAD-Deficiency Porphyria (ADP)
Hereditary Coproporphyria (HCP)
Variegate Porphyria (VP)

Cutaneous Porphyrias

Congenital Erythropoietic Porphyria (CEP)
Erythropoietic Protoporphyria (EPP)
Hepatoerythropoietic Porphyria (HEP)
Porphyria Cutanea Tarda (PCT)
x-linked protoporphyria (XLP)

Follow Us

Be the first to learn about special events, new resources, research opportunities and the latest medical advancements!

Join the Porphyria Together FB Group
Join us for an informative and insightful webinar exploring the science and realities of liver transplants in porphyria. Porphyria expert Dr. Amy Dickey, MGH, will discuss when a transplant may be considered, what the process involves, potential risk
Our official UPA Store is now live! From stickers to bow ties — and yes, even Porphy 💜 is available now for pre-order! Every purchase helps raise porphyria awareness and supports the work of the United Porphyrias Association. 👉 Check it out
➡️ Swipe to discover what helps them — maybe it’ll help you too. We all manage stress differently, but one thing’s for sure: you’re not alone in this. 💬 What helps you manage stress? Share it in the comments — let&rsq
"Recovering from paralysis is built on tiny victories." 💜 When Maria Paula was paralyzed by an AIP attack, she learned that recovery isn't about one big moment—it's about celebrating every small step. From moving a single finger to t
You might’ve heard the vampire legends 🧛‍♀️ — but porphyria is a real, complex group of rare diseases that go far beyond the myths. Let’s use this spooky season to raise awareness, not misinformation. 👉Swipe through the carou
This is our amazing team — Elsie, Joni, Eda, and Aida — during one of our Zoom calls where we shared art, visions, and finally agreed on what our piece will be. We're so excited to be part of the NIH Rare Disease Art Challenge, using our

Get Connected

  • Get your questions answered

    Our Patient Navigator can help you find porphyria specialist, access testing and treatments, and get your porphyria questions answered.

    Contact Us

  • Find others who know what it's like

    Connect regularly with small group of your peers! Groups are created around diagnosis and particular experiences/needs.

    Get connected

  • Talk one-on-one

    Connect with a UPA Ambassador who understands what you're going through, because they've been there too.

    Request a call