• Everything you need for your porphyria journey

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  • Patient & Family Conference 2025

    Join us for a weekend of learning, connection and fun! Organized by patients for patients and families.

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  • Bitopertin for EPP & XLP

    NOW RECRUITING!
    Phase 3 Clinical Trial

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  • International Porphyrias Symposium 2025

    Join us in Arlington, VA October 9-12 to advance knowledge in heme biosynthesis and the pathogenesis and treatment of the acute hepatic and erythropoietic porphyrias.

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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.

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  • Living with Porphyria

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

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  • 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.

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UPcoming Events

Events
International Porphyrias Symposium 2025
Oct 9
International Porphyrias Symposium 2025

Explore the clinical manifestations of each porphyria, and the latest advances in their diagnosis, management and treatment, including newly approved and emerging therapies with US and International Experts.

Patient & Family Weekend at IPS 2025
Oct 11
Patient & Family Weekend at IPS 2025

Connect with your “Porphamily” for a weekend of connection, celebration and science!

CEP Patient-Focused Drug Development Meeting
Oct 14
CEP Patient-Focused Drug Development Meeting

This special meeting will be attended by the US Food and Drug Administration (FDA) and will highlight patient experiences to deepen knowledge and understanding of Congenital Erythropoietic Porphyria (CEP) and support the development of treatments for CEP.

Mind, Body and Nerves: Daily Life with Acute Hepatic Porphyrias
Nov 9
Mind, Body and Nerves: Daily Life with Acute Hepatic Porphyrias

Join neurologist and porphyria expert Dr. Mohamed Kazamel for an informative webinar discussing the causes of chronic porphyria symptoms, which treatments are effective and strategies for managing symptoms day-to-day.

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.

The Latest UPdates

Featured
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.

The burden of EPP: Putting numbers to the realities of daily life
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.

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)

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

Join the Porphyria Together FB Group
To our EPP & XLP community: we have an important update to share! Today, September 30, Disc Medicine announced the submission of a New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) for bitopertin in people 12 years and ol
Creativity can be a powerful way to navigate life with porphyria🎨✨ Our friend and UPA Ambassador, Elsie Blackwell, patient with CEP and passionate model builder, has turned her love for painting and building into a meaningful outlet that connects de
Do you have a connection to CEP? Join us for an important milestone in CEP advocacy: the Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting for Congenital Erythropoietic Porphyria (CEP). 📅 Date: Tuesday, October 14, 2025 🕙 Time: 10:
Calling all Porphyria patients who are artists! ✨🎨 The NIH National Center for Advancing Translational Sciences is hosting the “Rare Diseases Are Not Rare!” Challenge, and we at United Porphyrias Association want to participate! We&rsq
Got questions or concerns about cutaneous porphyrias? 💜 Join us this Sunday at 3PM ET for a special ConnectUp led by Candace, a UPA Ambassador living with EPP. ✨ Safe space, real talk, and support from others who understand. 🔗 Comment PORPHYRIA to
From being called a hypochondriac to becoming a beacon of hope for thousands✨ Meet Erin Janiak, UPA’s Patient Navigator. For years, her excruciating pain from sunlight was dismissed as attention-seeking—until a pediatric dermatologist fin
Workshops, insights… and so much more! At the Patient & Family Conference at the IPS, you’ll have the chance to learn directly from leading porphyria experts and community members in powerful educational workshops. Get practical tip
Backpacks. Lunches. Homework. For most families, that’s what “back to school” means. But for rare disease families, it’s so much more. It’s seizure plans. Medication schedules. Absence notes. It’s bravery, worry,

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.

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  • 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.

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  • 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