Participate in Research
Participating in research is an important way you can contribute to the porphyria community. Research helps:
Develop and test new treatments for porphyria
Better understand the needs of people with porphyria
Check this page regularly or subscribe to our newsletter to hear about new opportunities as they become available!
Current Research Opportunities
Evidence-based Assessment of Medication Sensitivity in Acute Hepatic Porphyria
Help keep the drug safety database up to date!
This is an online study in which patients with acute porphyria or their caregivers submit surveys about their acute porphyria diagnosis and medication use, specifically medications that may have caused acute attacks, or “risky” medications that were taken safely. Participants are encouraged to update their surveys when they have new information to report.
EPP/XLP Gene Modifier Study
Why does the severity of EPP and XLP symptoms vary between people?
You’re invited to participate in this research study to help us understand why. Eligibility:
At least two family members (2 years or older) diagnosed with EPP or XLP
Can be located anywhere in the world- no travel is required!
This study is being performed by Dr. Mark Fleming at Boston Children’s Hospital and Dr. Amy Dickey at Massachusetts General Hospital.
If you're interested, please complete an interest form. You will be contacted with detailed information and next steps.