Skip to main content

Calling: Research Research Research!

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.


Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!


What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…


GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: (Porphyria Association Denmark)Denmark: (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…