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Porphyria news

Porphyria – Why Does It Take 10-15 Years to be Diagnosed?


Rare Disease Report - Apr 25, 2017
Unfortunately, a rare disease called porphyria, may be the problem. And because it is a rare disease, it occurs in young women during their menstrual cycle, it is generally a pain that subsides over time, and it is also associated with binge drinking ...
 

Meet Heather; Porphyria Patient and Liver Transplant Recipient


Rare Disease Report - May 1, 2017
The first 2 years after she learned she was a porphyria patient, she averaged one hospital visit each month. Some were lengthier than others, and the longest spanned six weeks. She almost had to drop out of the LPN program because she was falling so ...
 

Alnylam's Givosiran for Porphyria Patients Gets FDA Breakthrough Therapy Designation


Rare Disease Report - May 31, 2017
Givosiran is an investigational ribonucleic acid interference (RNAi) therapeutic targeting aminolevulinic acid synthase 1 (ALAS1) to prophylactically reduce porphyria-related attacks in patients with acute hepatic porphyria (AHP). AHP is a form of ...
 

Porphyria - premium items on eBay

Oliva porphyria 112.0mm GEM+ RARE IMPORTANT COCOS ISLAND BEAUTY


 

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


 

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


 

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Porphyria videos

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 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 ...
 

Living with the Intense Pain of Porphyria


Rose and Colin discuss the painful, debilitating sysmptoms of porphyria.
 

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 ...
 

Porphyria ¦ Treatment and Symptoms


http://goo.gl/nrXKgi ◅ Porphyria treatment — Finding the right information about Porphyria treatment & symptoms, is crucial to managing Porphyria. Learn more ...