The Porphyrias Consortium includes six of the leading Porphyria centers in the United States, as well as three satellite sites, that provide expertise and experience in the diagnosis and treatment of patients with Porphyria. The staff in each center includes Porphyria physicians, researchers, research coordinators, and technical/laboratory staff. Together with the American Porphyria Foundation (APF), the Porphyrias Consortium enables a large scale collaborative effort to develop new strategies and methods for diagnosis, treatment, and prevention of illness and disability resulting from these rare disorders. The Consortium website is a forum for disseminating information to Porphyria patients and their families, healthcare professionals, and other interested parties. The website also provides a list of currently active clinical trials and studies, with a description of each study and contact information for those who are interested. Of particular importance is the Longitudinal Study with the objective of characterizing the long term course and outcomes of each type of Porphyria. Clinical trials are being conducted to establish the safety and efficacy of new therapies leading to approval by the US Food and Drug Administration (FDA). Partial support for the Porphyrias Consortium is provided by a grant from the National Institutes of Health (NIH) as part of the Rare Diseases Clinical Research Network (RDCRN).
The mission of the Porphyrias Consortium is to expand knowledge about the Porphyrias and thereby benefit patients and their families.
Within the framework of collaboration, the Porphyrias Consortium provides new and current information about the Porphyrias to patients and their families, physicians and other health professionals, and the public. In addition, the Porphyrias Consortium provides training to young physicians who will be the future medical and research experts for these rare disorders.
Below is a list of some of the Porphyrias Consortium (PC) published research. The PC includes Drs. Karl Anderson, Montgomery Bissell, Joseph Bloomer, Herbert Bonkovsky, Robert Desnick, and John Phillips. There are a number of other texts ready for publication, so check back often. All PC members are also members of the APF Scientific Advisory Board. We hope as you read this list of publications, you will appreciate the depth of knowledge of our experts and their dedication to Porphyria patients. At a recent meeting, the experts said, "Because our retirement is approaching, we must train as many future experts as possible lest our fifty years of expertise is lost."
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