As we continue to establish our presence online, we will be conducting a series of webinars to help inform you about our ongoing research, as well as updates on patient care, and other APBDRF initiatives, all to be hosted by our global team of research experts.
11th Meeting of the APBDRF Scientific Advisory Board
10th Meeting of the APBDRF Scientific Advisory Board
– 2013 Research Update (December 5, 2013)
– GBE Interactions with Membranes: Implications in APBD (December 5, 2013)
– Nutrition for the APBD patient with Mary Wallace MS RD/LD, CCRC (October 19, 2012)
– Molecular Characterization of Polyglucosan Body, Cause or Consequence in the Disease (October 2012)
– Advances in APBD Research: High Content Screening, Antisense oligonucleotides and computational drug design with Dr. Or Kahlon (June 2012).
– High Throughput Screening with Dr. Orhan Akman (June 2012).
– Glycogen Synthesis with Dr. Berge Minassian (June 2012).
– Therapeutic Interventions Tested in APBD Models with Dr. Or Kakhlon, Dr. Alexander Lossos, Dr. H. Orhan Akman, Dr. Salvatore DiMauro (July 2011).
– Dr. Schiffmann’s SSIEM presentation:A double-blind placebo-controlled trial of triheptanoin in adult polyglucosan body disease.
This is a September 2016 presentation given at the SSIEM the Society for Inborn Errors of Metabolism annual meeting.
-Guaiacol deliberations a summary of 5 doctors'(Edwin Kolodny, MD; Or Kakhlon, Ph.D; H. Orham Akman, Ph.D.; andAlexander Lossos, MD. As well as Yoseph Caraco, MD, Head of the Clinical Pharmacology Unit, Hadassah Medical Center)
The FDA and the National Organization for Rare Diseases (NORD), have teamed up and chose through an application process, the APBDRF and 19 other rare disease communities to create a very patient-friendly natural history study registry for each.
In this podcast about his new initiative Daniel Levine interviews GFPD President and Co-Founder Melissa Bryce Gamble. Although we encourage you to listen to all of the podcast at about 7 minutes she speaks about registries and natural history studies.
Daniel Levine interviews GFPD President and Co-Founder Melissa Bryce Gamble