Contact UPA at 800-868-1292 or info@porphyria.org
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UPA is proud to share the updated comic book adventure featuring young Shadow Jumpers who tackle a UV villain with the knowledge and power they have gained from their experiences with EPP. This book was developed as an evidence-based resource resulting from a recent publication.
Thank you to everyone who joined our livestream with Dr. Bruce Wang (UCSF) on Saturday!
We had some great questions on topics like:
The recording is now available on the Porphyria Together group.
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!
CHECK OUT THE LATEST eNEWS FROM UPA!
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.
UPA is the most recent member of Global Skin, an International Alliance of Dermatology Patient Organizations. Though porphyria is based in the heme biosynthetic pathway, it is often recognized and diagnosed by a dermatologist. People living with dermatological conditions face stigma, shame, and other psychosocial challenges in addition to the physical symptoms of their disease. For many patients, including in the porphyrias, this is a lifelong burden that can have devastating social impacts. We are proud to join this unique global alliance serving patient organizations to improve the lives of dermatology patients worldwide.
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.
OUT & ABOUT: AWARENESS ACTIVITIES
UPA will exhibit at the American Academy of Dermatology Annual Meeting in New Orleans, LA March 17-20, 2023. This conference is a prime opportunity to engage with healthcare professionals. Advancing awareness, research and therapies are at the core of our mission!
(Photo above: UPA representatives at a scientific meeting in Nov 2022)
IN-PERSON PATIENT MEETING
TUES APR 25 - 5 to 7:30PM ET
Join us for an in-person patient education meeting and gathering and LinkUP with Dr. Sean Rudnick, Porphyria Expert and member of UPA's Scientific Advisory Board. We'll be serving up food, friendship and answers to your porphyria questions. All are welcome! Please register in advance. Parking details to come. REGISTER HERE
You are not alone!
Connecting with others who understand what you're going through is a great way to build a support system and community. UPA is pleased to launch Connect Up small group meetings for patients and caregivers to connect and socialize with others in a safe and inclusive environment. Connect UP groups will be peer-led and offered regularly over Zoom. SIGN UP HERE.
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!
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.
A world where patients are free from the pain and challenges of porphyria.
"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. "
