Rise UP. Speak UP.

Personal Assistance

We're here to help!
Personal assistance is available to you from the United Porphyria Association via phone or email.

For personal assistance via phone, call 800-868-1292.

Give to the UPA

You may never know the impact you will have on someone’s life by supporting the United Porphyrias Association.

Your gift enables us to be there for the next person who finds out that they have this rare disease.

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Sign UP to receive news and information, treatment and therapy updates, and to learn about current and upcoming research initiatives.

We look forward to serving you!

Resources for

Patients

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Resources for

Physicians

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Types of Porphyria

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Acute Intermittent Porphyria (AIP)

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Hereditary Coproporphyria (HCP)

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Variegate Porphyria (VP)

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ALAD-Deficiency Porphyria (ADP)

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Porphyria Cutanea Tarda (PCT)

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Erythropoietic Protoporphyria (EPP) and X-Linked Porphyria (XLP)

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Congenital Erythropoietic Porphyria (CEP)

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Hepatoerythro­poietic Porphyria (HEP)

Learn More.

Who we are

Our Mission

The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.

Our Vision

A world where patients are free from the pain and challenges of porphyria.

More About Us

UPdates

Tune in each Friday for the weekly What’s UP, Doc? question of the week response.
Do you have a question for a Porphyria Expert? Please submit to info@porphyria.org. *Your question and personal information will remain anonymous*

 

UP UP AND AWAY!
The United Porphyrias Association is up and running – and here to support YOU and your family. Backed by the preeminent porphyria doctors in the USA, we are proud to bring the expert voice to you. Learn more.

 

NIH PAIN SCIENCE
NIH Proposes increased budget to support pain research. From the Hippocratic corpus, the author writes, “I consider the responsibility of medicine to be to entirely relieve the suffering of the sick and to blunt the extremities of disease”. Read more.

 

RDCRN COVID-19 SURVEY
Were you among the Porphyria patients or caregivers that participated in the 2020 NIH Covid-19 survey? Preliminary results are available. And a follow-up survey is in the works. Don’t miss the opportunity to participate in important research that could help all living with a rare disease!

UP and Coming

GLOBAL EPP CONNECT
Sunday, June 26th

In coordination with the Global Porphyria Advocacy Coalition (GPAC) the umbrella organization for porphyria patient advocacy groups across the globe, United Porphyrias Associationis proud to share an invitation for EPP patients, families, and caregivers!

EPP Connect is a first ever event to bring EPP patients together from across the globe.

Click here to read more and register.

 


Member Highlight

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Rob Saupe

Erythropoietic Protoporphyria (EPP)

"Having been personally involved in porphyria research since 1975 I am very excited about the Porphyrias Consortium and the United Porphyrias Association (UPA) working together to secure the present and future of Porphyria Research. I am extremely grateful to the Porphyria Experts and the UPA for putting us porphyria patients first."

 

Proud Partners in Porphyria Advocacy

Consortium
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