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Medical Moment: Publications by porphyria experts


Medical Moment: Publications by porphyria experts

Over the years, the experts of the Porphyrias Consortium ( https://www.rarediseasesnetwork.org/cms/porphyrias/have developed an extensive list of publications. These articles have served to educate both patients and healthcare professionals. This lengthy list of publications includes the implementation of research studies, clinical trials, diagnosis, management, current and emerging therapies, etc. of the porphyrias.
Our team of experts continue to work on your behalf to provide you with the most up-to-date information as research continues.  Listed below are a few of the go-to publications. 

We invite you to click on the link below to see the full list of publications.
  1. Annals of Internal Medicine - Recommendations for the Diagnosis and Treatment of the Acute Porphyrias
  2. Benefits of Prophylactic Heme Treatment
  3. Diagnostic Delay in Erythropoietic Protoporphyria
  4. Hepatitis C, porphyria cutanea tarda and liver iron: an update


“Remember…. Research is the key to YOUR cure!!”

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