UPdates


Amy Dickey

PORPHYRIA PUBLICATION ALERT
UPA Scientific Advisory Board Member Amy Dickey, MD (Mass General Hospital) in the Journal of the American Academy of Dermatology. Prospective observational pilot study of quantitative light dosimetry in erythropoietic protoporphyria, this study explored novel strategies for measuring light tolerance in patients with EPP.

 

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. (Note: there is no longer a requirement to experience symptoms within 30-minutes of sunlight exposure.)  

ALL PORPHYRIAS
(EPP, XLP, CEP, VP, AIP, HCP, PCT, HEP, ADP) 
LONGITUDINAL STUDY: Long-Term Follow-Up Study to Better Understanding the Natural History of Porphyria. 

AHP
Medication Study to Inform Drug Safety 

Online observational study to create an updated list of medications that are risky or safe for people with one of the acute porphyrias.

AIP
AIP INTERVIEWS
: 60-Minute interview with porphyria specialists to discuss patient experience. 

AIP
AIP Gene Modifier Study

Study to find other genes that may make a person with AIP more or less likely to develop acute attacks.

EPP/XLP
EPP/XLP Gene Modifier Study  

Study investigating genetic factors associated with differences in light sensitivity among patients with EPP and XLP.

To learn more about study details and how to participate, contact UPA at 1-800-868-1292 or info@porphyria.org.


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

JOIN US FOR WHAT'S UP, DOC? LIVE
Dr. Bruce Wang (Porphyria Expert, UCSF and UPA Scientific Advisory Board Member)
Saturday, FEB 18 @ 1pm ET to answer your questions live on our Porphyria Together Facebook group. Join the group HERE

 

NIH RARE DISEASE DAY FEB 28
National Institutes of Health event to initiate and discuss important topics in rare disease research, the people they impact, and the collaborations that are advancing critical research.
This year's event will feature a session with UPA Member Jennifer Beck & UPA President Kristen Wheeden!
VIEW AGENDA & REGISTER HERE
(held both online and in-person)

Social Media

 

 

Porphyria Together on Facebook

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!

 

Resources for

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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)

Learn More.

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

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Congenital Erythropoietic Porphyria (CEP)

Learn More.

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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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