Dr. Joseph Hacia Creates Mosaic for GFPD Kids

We absolutely LOVE this beautiful image, created by GFPD Scientific Advisory Board member Dr. Joseph Hacia of the Keck School of Medicine at the University of Southern California. Dr. Hacia presented the mosaic he created at the 2015 Family & Scientific Conference, where it hung at the entrance of the conference space for all to see. Featured in the mosaic are pictures of many children who have PBD-ZSD, overlayed by an image of balloons released at the memorial service of Ginny Gamble who passed away this spring. Dr. Hacia used more than 600 images in creating this memorial to children affected with PBD-ZSD. We have so much appreciation for our community of researchers and clinicians who dev

NYT Article Highlights Dr. Braverman's Work on Peroxisomal Disorders

This article in today's New York Times tells a familiar story about families seeking treatment for their children suffering from a rare disease. Like those families, our families also rely on Dr. Nancy Braverman of McGill University in Montreal for much of our hope. Dr. Braverman is a researcher dedicated to PBD-ZSD and other related rare diseases, and attends our Family & Scientific Conferences to meet with our families and children with PBD. We’re so pleased to read of her successes with RCDP and wish the RhizoKids families and children the best of luck with their future drug trial. http://nyti.ms/1QhNNj4

A New Look at PBD-ZSD Patients Living into Adulthood

A newly published article in the Journal of Metabolic Disease describes a “distinct subgroup within ZSDs [Zellweger Spectrum Disorders] who survive into adulthood” and “emphasizes that ZSDs should no longer be considered solely as a paediatric disease.” Primary author Kevin Berendse, and his colleagues Drs. Bwee Pol-The and Dr. Ronald J. A. Wanders were in attendance at the recent International Peroxisome and Leukodystrophy Meeting in Omaha, NE, and met with many of our families and children there. http://link.springer.com/article/10.1007/s10545-015-9880-2/fulltext.html

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Tulsa, OK 74153


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 Images on this site were contributed by families and may not be used without permission.