Contact UPA at 800-868-1292 or info@porphyria.org
In addition to Ongoing Research, here are current studies that need patient support!
A Randomized, Double-blind, Placebo-Controlled Study of Bitopertin to Evaluate the Safety, Tolerability, Efficacy, and Protoporphyrin IX (PPIX) Concentrations in Participants With Erythropoietic Protoporphyria (EPP).
For detailed information visit www.clinicaltrials.gov or click here.
Disc Medicine is a Massachusetts-based pharmaceutical company focused on Hematology.
To read the press release, click here.
To learn more, contact United Porphyrias Association at 800-868-1292 or email kristen@porphyria.org. UPA will connect you with a study site when recruitment begins.
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).
You qualify for this one-time 60-minute telephone interview study if you…
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.
Contact Kristen Wheeden by email or telephone: Kristen@porphyria.org or 800-868-1292
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.
Patients with Acute Intermittent Porphyria (AIP) anecdotally report using Complementary and Alternative Medicines (CAMs) and cannabis to alleviate their symptoms, but this has never been formally assessed. Click the link below to participate in a de-identified survey so we can learn more!
Anyone with AIP who is 18 years or older can participate. If you have never used CAMs or cannabis, you can participate as well.
* 2 slots remaining
Patients with 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 who is 18 years or older can participate. If you have never used CAMs or cannabis, you can still participate!
Stay tuned for several studies related to:
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The excitement in porphyria is building as research projects grow – don’t miss an opportunity to participate!
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