UPdates

NEW RESEARCH OPPORTUNITIES
EPP
DISC MEDICINE - BITOPERTIN
 
Phase 2 Clinical Trial for patients with EPP.
CLICK HERE to receive more information.

EPP/XLP
CIMETIDINE

A research study is underway to assess treatment with Cimetidine in patients ages 15+ with EPP/XLP. Email info@porphyria.org.

AHP
AHP PATIENT EXPERIENCE RESEARCH: 15-minute online survey
AIP PREDISPOSING OR PROTECTIVE GENES: In-depth interview with a genetic specialist. Email info@porphyria.org.
AIP INTERVIEWS: 60-Minute interview with porphyria specialists to discuss patient experience. Email info@porphyria.org.

 

PORPHYRIA TOGETHER ON FACEBOOK
https://www.facebook.com/groups/porphyriatogether
We welcome you to join Porphyria Together, a new closed Facebook group where you will find helpful information in a safe community setting. JOIN US online!

 

UPA ON YOUTUBE – SCIENTIFIC ADVISORY BOARD VIDEO SERIES
The UPA Scientific Advisory Board contributed to a video series highlighting responses to questions regarding porphyria diagnosis, management, and treatment. Access videos HERE.

 

UP and Coming

WHAT’S UP WORKSHOP
November 9 @ 7PM ET | 4PM PT

Virtual session will focus on Porphyria Life Hacks + Lessons Learned. Come share your experiences and learn from others. Register HERE.

workshop

 

Pediatric Dermatology Research Alliance (PEDRA)
November 4-5, 2022

UPA exhibiting, Bethesda, MD

 

AASLD – The Liver Meeting
November 4-5, 2022

UPA exhibiting, Washington, DC.

 

ASH – Hematology Annual Meeting
December 10-13, 2022

UPA exhibiting, New Orleans, LA

 

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

Member Highlight

Victor Mejias

Erythropoietic Protoporphyria (EPP)

"I was diagnosed at the age of 6 with EPP after my parents noticed that every time I was outside I was experiencing anguishing discomfort. I never fully comprehended my diagnosis until I was able to connect with others. With the help of the UPA, I want to be able to help others live more comfortably with EPP and support the vision of a world where patients are free from the pain and challenges of porphyria. "

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Proud Partners in Porphyria Advocacy

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