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Porphyria news

Marathon Pharmaceuticals Appoints New Members to its Advisory Board


Business Wire (press release) - Dec 20, 2016
Desiree Lyon Howe is the co-founder of the American Porphyria Foundation (APF) and has served as its Executive Director for 25 years. Lyon Howe is an author and a rare disease advocate who earned the 2016 National Organization for Rare Disorders ...
 

Rare genetic variations may solve mystery of porphyria severity in some patients St. Jude Children's Research Hospital


EurekAlert (press release) - Aug 10, 2016
An international research team has linked rare variations in a cell membrane protein to the wide variation in symptom severity that is a hallmark of porphyria, a rare disorder that often affects the skin, liver and nervous system. St. Jude Children's ...
 

Treatment of Porphyria cutanea tarda


News-Medical.net - Jun 24, 2016
Porphyria cutanea tarda (PCT) is a common form of hepatic porphyria characterized by symptoms such as fragile, blister-prone skin particularly on sun-exposed areas. The condition occurs due to an acquired or inherited deficiency in the activity of ...
 

Porphyria - premium items on eBay

Oliva porphyria 110.6mm GEM GALAPAGOS IMPORTANT MAJESTIC BOLD PATTERN BEAUTY


 

Relationships in Dermatology: The Skin and Mouth, Eye, Sarcoidosis, Porphyria (N


 

Relationships in Dermatology: The Skin and Mouth, Eye, Sarcoidosis, Porphyria (N


 

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Porphyria books

Porphyria: The Unknown Disease


by: Diana Deats-O'Reilly
A vital book to the countless number of people who suffer from the debilitating effects of the metabolic inherited disease Porphyria written in a non-medical terminology for both the patient and medical clinician.
>> More info on Amazon

Porphyria: A Lyon's Share of Trouble


by: Desiree Lyon Howe
Desiree Lyon Howe is the co-founder of the American Porphyria Foundation and has also served as the Executive Director of the foundation for twenty five years. In this remarkable book, she relates her own experience with acute intermittent porphyria, a rare disease. Although the keystone of this book is Desiree's story, she also addresses the prime issues that obstruct patients from gaining a correct diagnosis and proper treatment for all of the other porphyrias, particularly since porphyria is not found through regular testing.
>> More info on Amazon

The Porphyrians: A Story of Inheritance and Environment


by: G.K. Dean

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Porphyria - A Royal Malady


by: British Medical Journal

>> More info on Amazon

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Porphyria pictures on the web

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Porphyria videos

Porphyria pathology


Porphyria is a metabolic disease in the synthesis of Heme. Heme is made up of a molecule of protoporphyrin plus an iron ion Fe(2 ). When the enzymes that ...
 

What is Porphyria? | Summer Shade Ep. 1


Porphyria J is a vlog devoted to creating community and awareness around Porphyria. Summer Shade is a 13 week series focused on living with EPP during the ...
 

Porphyria - Katy's Choice


Katy Green is a remarkable person. Doctors said she wouldn't survive. They said she would never have children. She is very much alive and a very proud ...
 

A Doctor suffers from AIP (Acute Intermittent Porphyria)


Physician, Dr Lisa Kehrberg suffers from (AIP) Acute Intermittent Porphyria.
 

Dr. Nilesh Patel - Acute Intermittent Porphyria


Dr. Nilesh Patel discusses Acute Intermittent Porphyria. You see lots of abdominal pain. Have you diagnosed AIP?