Your Porphyria Roadmap

Everything you need to navigate life with porphyria

Understand your Diagnosis

Visit About Porphyrias for an overview of porphyria and answers to some FAQs.

Understanding Porphyria Guide

Learn about the science behind the porphyrias, the different types, its diagnosis and treatment, and commonly asked questions in this helpful guide for patients and healthcare providers.

Explore detailed information on treatment, management and coping day-to-day for your type of porphyria:

Acute Hepatic Porphyrias

Cutaneous Porphyrias

Summing UP provides easy-to-understand summaries of some of the latest porphyria research. Get a handle on the research that is leading to new treatments, improved care and better quality of life for everyone affected by porphyria.

The latest Summing UPs

Porphyria Spotlight
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.

Using AI to Diagnose Porphyria
Using AI to Diagnose Porphyria

People with symptomatic acute hepatic porphyria (AHP- includes AIP, VP and HCP) often wait about 15 years to get diagnosed, which is too long. This research used information from electronic health records (EHR) and machine learning (ML) to see if they could find people with AHP faster.

The EPP Impact Questionnaire
The EPP Impact Questionnaire

Having a standardized questionnaire tool is important to evaluate and demonstrate the effectiveness and impact of new treatments for EPP. Regulators like the FDA consider improvements in quality of life, along with other factors, when deciding whether to approve new treatments.

This research developed a questionnaire called the EPP Impact Questionnaire or EPIQ.

You have questions, we help get answers!

UPA Patient Navigator is a specialist who can help direct you on your journey. Reach out for one-on-one support!

What's UP Doc? is a regular feature where porphyria experts answer your questions. Check out the library of answers and look out for special livestreams!

The latest from What’s UP Doc?

Featured
Urine Porphyrins for Diagnosis
Urine Porphyrins for Diagnosis

Question: I think I might have Acute Intermittent Porphyria (AIP). My doctor ordered a urine porphyrin test, my porphyrins were high but then I was told that the results aren't considered diagnostic. Why not? And what tests should my doctor order?

Porphyria and Menopause
Porphyria and Menopause

Question: How will menopause affect my porphyria? Are estrogen treatments for menopause safe?

Connect with resources and support

You don’t have to go through this alone. UPA can help you connect with someone who shares your diagnosis, build a support network and find your care team.

Join UPA to receive updates, and learn about new resources, events and research opportunities!

Connecting with others who understand what you're going through is a great way to build a support system and community.

Connect Up are small group meetings for patients and caregivers to connect and socialize with others in a safe and inclusive environment. Connect UP groups are peer-led and offered regularly over Zoom.

Sometimes you need to talk to someone who understands.

With UPA 1:1, we connect you with a UPA Ambassador who understands what you're going through, because they've been there too.

Connect by phone or video call to receive support, guidance and build meaningful connections with a fellow porphyria patient or caregiver. Available in English and Spanish.

Share your successes and struggles with our private Facebook community. The group also hosts regular livestream where porphyria experts take your questions.

We collaborate closely with a network of porphyria experts who are active members of the UPA Scientific Advisory Board and the American Porphyria Expert Collaborative.

Contact UPA at 800-868-1292 or info@porphyria.org for help to:

  • Locate a physician in your area. Please note: porphyria experts often require a diagnosis prior to accepting and scheduling a new patient.

  • Educate your current physician.

  • Arrange a peer-to-peer consult between your physician and a porphyria specialist

Explore a topic in detail in an educational webinar, join a livestream to ask an expert your questions, connect and celebrate with others at special in person events!

Check out upcoming events and check out recordings from past events on the Events Page.

Upcoming events

Featured
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!

Stay connected and make a difference! Follow United Porphyrias Association on social media to see the latest news and resources, inspiring stories, real impact, and ways you can help create change.

Every follow, like, and share spreads awareness and hope. Together, we can build a better future—one post at a time!

Get Involved!

You can help create a world free from the pain and challenges of porphyria. Together we can raise awareness, improve diagnosis and care and develop better treatments.

Participating in rare disease research helps uncover vital treatments, improve lives, and bring hope to our community.

UPA works closely with the Porphyrias Consortium to support research that helps us better understand porphyria, improve care and ultimately find a cure!

Your time and experience can make a huge difference to our community! Find out how you can get involved.

Featured Volunteer Opportunities

Featured
1:1 UPA Ambassador
1:1 UPA Ambassador

Help fellow porphyria patients and caregivers navigate their diagnosis and adjust to the realities of living with porphyria.

Sun Escape Volunteer 2025
Sun Escape Volunteer 2025

Join us in 2025 to make an impact in the life of children, youth and young adults facing with photosensitive conditions!

Help us raise understanding and awareness of porphyria by sharing your story on UPA's website and social media platforms. A UPA team member will support you to develop your story.

We can’t do it without you! Your donations fund critical research, support patient services, raise awareness, and drive advocacy efforts for porphyria and all rare diseases.

Every dollar brings us closer to breakthroughs, better treatments, and brighter futures for those affected. Together, we can transform lives and make a lasting impact.