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The Propionic Acidemia Foundation (PAF)
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The video below was produced by The Propionic Acidemia Foundation (PAF), from their PAF Education Conference held in Chicago, Illinois in August 2010.
View the Entire Conference
Click here to launch the player, or view individual programs by clicking the links below.
Highlights from Conference Video
In August 2010, the Propionic Acidemia Foundation (PAF) along with Children’s Memorial Hospital (CMH) of Chicago, hosted the first PAF Education Conference. The purpose was to bring together affected families, while learning about current research, treatments and nutrition. There were approximately 60 people in attendance. There were four amazing speakers:
Barbara Burton, MD: physician of Medical Genetics, Clinical and Biochemical Genetics at CMH and leader in treating patients with rare inborn errors of metabolism. She presented an overview of organic acidemias and current treatments in a simple, yet comprehensive format.
Katherine Kim, MS: genetic counselor at CMH. She presented an overview of organic acidemias and current treatments in a simple, yet comprehensive format.
Maryam Naziri, RD, LDN: metabolic dietitian at CMH. She discussed the nutritional aspects of treatments, and why many individuals with PA are fed through feeding tubes.
Loren Pena, MD, PhD: physician of Medical and Clinical Genetics at the University of Illinois, College of Medicine. She presented a summary of results from 46 surveys that had been received to date.
National Comprehensive Cancer Network (NCCN)
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