Research Volunteers Needed


We are seeking patients to join our research studies. Get involved today!


Longitudinal Study:

Participation in this study is very easy. It does not require you to travel to the research site. The study involves a review of your medical records, completing comprehensive questionnaires about your symptoms and quality of life, and providing blood and urine samples. You will be working closely with porphyria experts and researchers.

The purpose of this long-term follow-up study is to provide a better understanding of the natural history of porphyrias, as affected by available therapies, and to aid in developing new forms of treatment.

All Porphyrias


Panhematin Study:

This clinical trial compares Panhematin to glucose to determine the effectiveness of Panhematin as treatments for acute attacks.


Contact Edrin at the APF for additional information.


Harvoni Study for PCT:

This clinical trial will assess whether Harvoni alone is an effective and durable treatment for PCT in patients with both HCV and PCT. This trial will also determine whether treating patients with PCT and HCV with Harvoni is as effective as treating PCT with standard therapies, phlebotomy or hyrdoxychloroquine.

Therefore, the purpose of this study is to determine if giving a standard treatment for HCV is also an effective treatment for PCT.

Contact Edrin at the APF for additional information.


Iron Therapy for EPP:

This research study aims to determine if oral iron can decrease erythrocyte protoporphyrin levels in patients with EPP or XLP, to assess whether oral iron can improve iron status and decrease plasma porphyrin levels and symptoms in patients with EPP or XLP and assess if there is an improvement in the quality of life in treated patients.

Therefore, the purpose of this study is to determine the effect of oral iron in EPP and XLP patients.

In order to participate in a study, you must personally contact the study coordinator of the participating institution closest to you by phone or e-mail. Please contact Edrin at the APF at 1.866.APF.3635 or 713.266.9617 for further information.



Jared Ulmer has created Summer Shade 2017, a vlog dedicated to raising awareness around Porphyria. We are proud of his creativity and dedication to the EPP community. Summer Shade was made for those who suffer and for the kids who are in the shadows.  Please feel free to share this video with your community.  As Jared says, "seek shade and stay happy!"



"Remember....Research is the key to your cure!"