Monday, January 30, 2012

Here are some exciting things going on at the APF and how you can be Involved!

PORPHYRIA RESEARCH The following are some of the research projects of the APF Research Coonsortium. The following porphyria researchers direct the projects: Dr. 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
Research patients are needed for these and other reseach projects...Just go to the Porphyria Registy on the top line of the APF website and follow the prompts. 

Desiree Lyon Howe
American Porphyria Foundation
4900 Woodway Dr. Ste 780
Houston , TX 77024

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