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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

  • 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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    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
Reproductive Health and Acute Hepatic Porphyrias
Jan 11
Reproductive Health and Acute Hepatic Porphyrias

Join Dr. Rebecca Karp Leaf, a leading porphyria specialist at the Porphyria Center at Massachusetts General Hospital (MGH), for an informative webinar on reproductive health and porphyria!

The Latest UPdates

Featured
Take Care and Celebrate: Adapting the Holidays to My Porphyria
Take Care and Celebrate: Adapting the Holidays to My Porphyria

Diana Escobar (AIP) shares her tips and recommendations for enjoying the festive season without compromising your health.

Meet Dr. Makiko Yasuda, Porphyria Researcher
Meet Dr. Makiko Yasuda, Porphyria Researcher

One thing I love about science is you learn something, then new information comes up and it opens up a whole new set of questions.

Mental Health in the Porphyrias
Mental Health in the Porphyrias

This study involved focus groups with porphyria patients to explore the emotional and psychological challenges they face. Participants discussed their lived experiences, shared coping strategies, and offered recommendations for additional support to improve their quality of life.

UPA Receives Prestigious CZI Grant
UPA Receives Prestigious CZI Grant

The United Porphyrias Association (UPA) is honored to announce its selection as a recipient of the Chan Zuckerberg Initiative’s (CZI) Rare As One grant.

Learn more about your porphyria

Acute Hepatic Porphyrias

Cutaneous Porphyrias

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

🗣️ Introducing Our New Blog: Porphyria Voices 🗣️ We’re thrilled to launch Porphyria Voices, a space where people living with porphyria share their unique stories, insights, and experiences with the community 💜 Our first blog post is writte
Imagine being told it’s “just anxiety,” only to discover you have a rare disease like Hereditary Coproporphyria (HCP). HCP is one of the acute hepatic porphyrias, with symptoms like severe abdominal pain and even blistering skin sen
Great to attend the 66th American Society of Hematology Annual Meeting and share information on #porphyria diagnosis and care! Porphyria related sessions included: 👉 Ironing Out the Wrinkles: Managing Iron Overload in Different Clinical Scenarios
The Living Rare Study is a groundbreaking effort that will collect insights from YOU – patients and caregivers - about the challenges of daily life with a rare disease. Help us collect the data we need to show that rare diseases are a public
Join Dr. Rebecca Karp Leaf, a leading porphyria specialist at the Porphyria Center at Massachusetts General Hospital (MGH),on Saturday, January 11 for an informative webinar. We'll cover: 👉Family planning for individuals with porphyria 👉Pregnancy
Dr. Makiko Yasuda has been working to unlock the mysteries of the acute hepatic porphyria (AIP, HCP, VP) for almost 20 years. We recently sat down with her to learn how her research has advanced our understanding of #porphyria and what big question

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.

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