Sunday, March 24, 2013

Porphyria Research is the Key to Your Cure

Porphyria Research is the Key to Your Cure. Unfortunately, the numbers of patient volunteers
is very small. More volunteers are needed. Please contact the APF if you are interested in
participating in one or more of the research projects below directed by these experts: Karl Anderson,
University of Texas Medical Branch, Galveston, TX; Dr. Robert Desnick, Mount Sinai School of Medicine,
NYC, NY; Dr. Joseph Bloomer, University of Alabama, Birmingham, AL; Dr. Montgomery Bissell;
University of California, San Francisco, CA; Dr. Herbert Bonkovsky, Carolinas Healthcare Systems, Charlotte, NC; and
John Phillips, Ph.D. University of Utah, Salt Lake City, UT.
• Mitoferrin-1 Expression in Patients with Erythropoietic Protoporphyria (EPP)
• A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of Panhematin in
the treatment of acute attacks of porphyria
• Clinical Diagnosis of Hereditary Coproporphyria (HCP)
• Quantification of the Effects of Isoniazid Treatment on Erythrocyte and Plasma Protoporphyrin IX Concentration
and Plasma Aminolevulinic Acid in Patients with Erythropoietic Protoporphyria
• Hydroxychloroquine (HCQ) vs. Phlebotomy for Porphyria Cutanea Tarda
• EPP: Natural History, Genotype-Phenotype Correlations, and Psychosocial Impact
• A Pilot Study of Biomarkers Predicting Clinical Expression of Acute Porphyrias
• Transplantation in EPP: A Review
• Longitudinal Study of the Porphyrias
Only 650 people joined the Porphyria Registry. With so few people registering, the government funding
agencies will NOT provide funding for porphyria research. They monitor if there are enough patients to
warrant research funding. Porphyria experts created the Registry for you to share information about your
health and as a means to learn from the experiences of many patients around the country. They will then
use the knowledge to enhance diagnosis, treatment and find a cure for porphyria. Please take five minutes
and sign up for the Porphyria Registry. Then you will be contacted by one of the research team. Joining the Porphyria
Registry is anonymous and free, and all data is stored in a secure, computerized database. No personal identifying information
will be given to anyone without your expressed approval. PLEASE TELL FAMILY MEMBERS WITH OR WITHOUT
SYMPTOMS THAT THEY ARE NEEDED, TOO. Click on the Porphyria Registry button on the top line of the Home
Page of the APF website, click on Join the Registry and locate the Porphyria Research Consortium and follow directions.

Remember....Research is the Key to your cure! 

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