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Showing posts from October, 2018


Porphyria Post


We are excited to announce that we will launch our newly updated APF website TOMORROW. It is optimized to offer the patient community and healthcare professionals easy access to critical content - written by renowned experts - on all of the porphyrias.
On Thursday, November 1, 2018 you will be able to access the new website from any browser and on any device at
Thank you to our members, industry partners, and our brilliant physicians for making this update possible!

Porphyria POST

VOTE: 2019 Pet Calendar, RSVP - Patient Education Meetings and EPP Clinical TrialsLet the voting begin! Submissions have now closed for the 2019 Pet Calendar Contest. We appreciate all of your entries and can't wait to see how well everyone does in the contest. If you haven't already done so, please go to the APF website to see everyone's submissions! Make sure that you see your share this link and your individual voting pages with your family and friends. The final 12-month wall calendar will feature your wonderful animals, porphyria facts, tips, and important dates. Voting for the top slots will be held online and will benefit our critical Protect the Future program. Link: 2019 Pet Calendar Contest Submissions
Here’s how it works: To Vote: ALL photo entries will be included somewhere in the calendar, though the “top dogs” will be featured on the cover and in each month! Starting October 23rd - Your pet’s photo will be posted on the APF website for all to see. You’ll be able to s…

Emergency Room Guidelines for Acute Porphyrias

Emergency Room Guidelines for Acute Porphyrias These Emergency Room Guidelines (download PDF) cover essential information for the emergency physician treating a patient in an acute porphyria attack, including common precipitating factors, typical presentation and other diagnostic clues, making the initial diagnosis, common sequelae and best practices for treatment. A PowerPoint presentation (as PDF) for instruction is also available. Please note: These Guidelines are for Physician Use Only. The APF sells a separate, personalized Emergency Room and Primary Care Physician Kit that contains all the information acute porphyria patients need to have with them in the Emergency Room (medical journal articles, information about diagnostic labs and Panhematin®, room for your own diagnostic test results). Key Points
Clinical Features
Diagnostic Recommendations
Bibliography Neville R Pimstone MD, PhD, Head Liver Diseases Greater West Los Angeles Veterans Affairs, Professor Emeritus…

Pediatrics & EPP

Share your article!
Dear Dr. Balwani, We are pleased to let you know that the final version of your article Diagnostic Delay in Erythropoietic Protoporphyria is now available online, containing full bibliographic details. To help you access and share this work, we have created a Share Link – a personalized URL providing 50 days' free access to your article. Anyone clicking on this link before December 11, 2018 will be taken directly to the final version of your article on ScienceDirect, which they are welcome to read or download. No sign up, registration or fees are required. Your personalized Share Link: Click on the icons below to share with your network:


WRITTEN ALL OVER HIS FACE: RARE DISEASE OFFERS CLUES TO HOW WE READ EMOTIONS People who feel what they see offer clues about how we read emotions and empathize By Michele Solis | July 4, 2011 Understanding the thoughts and feelings of other individuals is essential for navigating the social world. But empathy is a complex process, based in part on fleeting facial expressions. Research suggests that we empathize by effectively putting ourselves in others’ shoes: for example, when we observe someone feeling sad, we simulate their experience by activating the same regions of the brain that are involved when we feel sad ourselves. A study in the Journal of Neuroscience in February bolsters this idea using rare individuals with “mirror-touch synesthesia.” When watching another individual being touched, these people actually feel a touch on the same part of their own body. Neuroscientist Michael Banissy and his colleagues at University College London tested whether this heightened ability to…