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Porphyria news

EMA adds Alnylam RNAi drug to PRIME fast-track scheme


FierceBiotech - Mar 1, 2017
The European Medicines Agency (EMA) has added Alnylam's acute hepatic porphyria candidate to its priority medicine (PRIME) scheme. Securing the status positions Alnylam to benefit from a close relationship with the EMA as it works to move the drug ...
 

EMA Green Lights Accelerated Program for RNAi Therapeutic


Technology Networks - Mar 2, 2017
Specifically, data were recently reported in patients with acute intermittent porphyria (AIP) experiencing recurrent attacks. As presented at the 2016 American Society of Hematology (ASH) meeting, givosiran demonstrated initial evidence for clinical ...
 

New law 'tints' the vehicle inspection process


Times Herald-Record - Mar 8, 2017
The only exception to the new law is if you suffer from porphyria, xeroderma pigmentosa or severe drug-induced photosensitivity. If you have any of these medical conditions you have to file an Application for Tinted Window Exemption (MV-80W). It is ...
 

Porphyria - premium items on eBay

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


 

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


 

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


 

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Porphyria books

Porphyria: The Ultimate Cause of Common, Chronic, and Environmental Illnesses - With Breakthroughs in Diet, Supplements, and Energy Balancing


by: Steven, Ph.d Rochlitz
This is a 162 pg. 8 1/2 x 11 self-help book with "Breakthroughs in diet, supplements, and energy balancing." This is a well researched study on Porphyria.
>> More info on Amazon

Purple Canary: The Girl Who Was Allergic To School: The True Story Of How School Chemicals Unleased A "Rare" Illness That Devastated A Young Girl's Life


by: Joyce Gould

Bizarre symptoms and debilitating neurological attacks that happened only at school upended eleven year old Jill’s world. Skeptical medical specialists attributed the odd, recurrent symptoms to the adoptee’s biological inheritance then to a mental illness. Disbelieving school officials labeled her an attention-seeking faker. Jill and her mother Joyce insisted the symptoms had a physical base. Medical experts were shocked when DNA testing proved that the mutant gene associated with a “rare,” genetic metabolic/enzyme disorder was harbored in Jill’s liver.
>> More info on Amazon

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

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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 ...
 

Dr. Nilesh Patel - Acute Intermittent Porphyria


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

Rose and Colin - Living with Porphyria


 

Acute Intermittent Porphyria with Image Based Mnemonic


Wear about Acute Intermittent Porphyria with this IB-MD.