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Showing posts from October, 2017

PORPHYRIA POST: Health Professional Radio interview

PORPHYRIA POST: Health Professional Radio interview
Desiree Lyon Howe, APF Executive Director, was given the opportunity to enhance porphyria awareness by participating in a live radio interview with Health Professional Radio. Desiree spoke on the acute hepatic porphyrias, raising patient and physician education, misdiagnosis and much more. Health Professional Radio is an online radio/podcast network targeting 35K global healthcare professional listeners with a focus on "news and talk" geared toward a range of healthcare professionals across specialties and with a range of clinical experiences (including residents, nurses, and MDs). The show includes interviews with experts and everyday people on important health topics; some content is clinical, some management orientated, and some lifestyle orientated. Click on the link to take a listen: https://healthprofessionalradio.com.au/american-porphyria-foundation/
"Remember....Research is the key to your cure!"

Patient Connect Alnylam Announcement

October 25, 2017
Alnylam is currently conducting a study with individuals who have acute hepatic porphyria (AHP), including AIP, VP, HCP, or ADP, as well as with caregivers of someone with AHP. The purpose of this study is to receive feedback about a newly developed porphyria electronic diary. Please click here to open a document for more information about this study. 
Please note – It’s important that the participants in this research are not identified to Alnylam. If you are interested in participating, please contact:
Siobhan McDonold Telephone: 617-612-4053 Email:siobhan.mcdonold@endpointoutcomes.com
A phone screen will take place to ensure that eligibility criteria are met before an in-person interview is scheduled. Participants must provide genetic documentation of AHP and have had at least one attack in the last six months. The interview will be conducted in-person, will be approximately 60 minutes long, and will be audio-recorded. Participants will be compensated for their time. Aln…

Liver disease in erythropoietic protoporphyria: insights and implications for management

Liver disease in erythropoietic protoporphyria: insights and implications for managementA V Anstey and R J Hift Author information ►Copyright and License information ► This article has been cited by other articles in PMC. The porphyrias are a group of disorders caused by defects in haem biosynthesis (fig 1​1).). Of the seven main types of porphyria recognised, two are characterised by associated liver disease (table 1​1).). In porphyria cutanea tarda it is the liver disease which leads to the onset of the porphyria, characterised by blistering, hirsutes and skin fragility of sun‐exposed skin. A number of different liver diseases may precipitate porphyria cutanea tarda including haemochromatosis, alcoholic liver disease and hepatitis C. In contrast, in erythropoietic protoporphyria (EPP) it is the porphyria itself which leads to liver disease, due to progressive deposition and accumulation of insoluble protoporphyrin IX in hepatocytes and bile canaliculi. Figure 1 The haem biosynthetic …