The Future of Porphyria...
PORPHYRIAS CONSORTIUM
and
UPA SCIENTIFIC ADVISORY BOARD

The United Porphyrias Association is proud to be the designated patient advocacy organization of the NIH-sponsored Porphyrias Consortium (PC). 
The expert physicians of the PC provide expertise and experience in the diagnosis and management of patients with all the porphyrias. Each physician also serves on the UPA Scientific Advisory Board.

The PC shares that “Together with United Porphyrias Association, our only designated patient advocacy group, the Porphyrias Consortium enables a large-scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from these rare disorders.” 

This team of dedicated porphyria specialists include 6 Porphyria Centers and 7 Satellite Porphyria Centers across the United States. UPA engages with each center daily – referring patients, requesting responses to patient questions and concerns, and connecting for peer-to-peer physician consults, and recruiting for current research surveys and studies!

Porphyria patients are at the center of all porphyria research! There are multiple studies going on NOW that need your patient expertise. 
Check out Latest News in Research projects and recruitment and how to participate.
SEEKING INTERVIEW PARTICIPANTS
IN THE
UNITED STATES

The United Porphyrias Association (UPA) is collaborating with Alnylam Pharmaceuticals and RTI Health Solutions (RTI-HS) to identify individuals with acute hepatic porphyria (AHP) who are interested in participating in an interview study conducted by RTI-HS (on behalf of Alnylam Pharmaceuticals).

Do You Qualify?
You qualify for this one-time 60-minute telephone interview study if you…
  • Participated and completed an Alnylam Pharmaceuticals clinical trial for givosiran (the Phase 1/Phase 2 Open Label Extension or “ENVISION” trial),
  • Continued to take, and currently take givosiran (GIVLAARI®)
The objective of these interviews is to capture, in the patients’ own words, the symptoms and impacts of AHP and their experiences over the time they have received givosiran.

Interview participants will each receive $100 in appreciation of their time.

Next Steps…
If you qualify and are interested in participating in an interview or just want to learn more about this study, please contact Kristen Wheeden of the UPA by email or telephone:
Telephone: 800-868-1292
MEDICATION STUDY
TO INFORM DRUG SAFETY

The NIH-Supported Porphyrias Consortium has launched an online observational study to collect information on acute porphyria attacks that may have been caused by a medication.

The “Evidence-Based Assessment of Medication Sensitivity in Acute Hepatic Porphyria” requests patient and caregiver reports on suspected medication/drug-induced acute porphyria attacks, as well as safe use of drugs previously labeled "unsafe" or with unknown risk. 

The goal of this project is to create an updated list of medications that are risky or safe for people with one of the acute porphyrias.

After consenting, participants 18+ will be provided a unique web link to complete the initial survey. Participants will be encouraged to update their surveys when they have new information to report.

To participate, please contact United Porphyrias Association on info@porphyria.org or call 800-868-1292.
AHP and EPP
Patients with Acute Intermittent Porphyria (AIP) and Erythropoietic Protoporphyria (EPP) anecdotally report using Complementary and Alternative Medicines (CAMs) and cannabis to alleviate their symptoms, but this has never been formally assessed.

Click the links below to participate in a de-identified survey so we can learn more! 

Anyone with EPP or AIP who is 18 years or older can participate. If you have never used CAMs or cannabis, you can still participate!
 
Click Below!
AHP
EPP
EPP/XLP INTERVIEW RESEARCH STUDY

Do you have Erythropoietic Protoporphyria (EPP) or X-linked protoporphyria (XLP)? 

Interested in participating in Zoom interview?

We are seeking ~ 20 adults and adolescents with Erythropoietic Protoporphyria (EPP) or X-linked protoporphyria (XLP) in the US and Canada who are at least 12 years of age and speak English. 

If you qualify for the study, you will be asked to participate in one Zoom interview that will last no more than one hour.

Each interview will be scheduled at a time that is convenient for you, including during the day, during the evening, or on weekends and will be conducted by a member of a project team.

After you complete the interview, you will receive a $150 Amazon gift card for your time. 

Email info@porphyria.org or call 800-868-1292 to participate!
Stay tuned for several studies related to:
  • CEP
  • EPP pediatric/caregiver interviews
  • EPP clinical trials, and
  • AHP Patient-Reported Outcomes