Sleep issues in individuals with WAGR has been a topic of concerns for many WAGR families. This recently published study looked at sleep problems in kids with WAGR. The survey asked about how…
Managing healthcare for individuals with WAGR spectrum can be confusing and complicated. Now for the first time ever, there are evidence-based guidelines that provide specific recommendations…
The International WAGR Syndrome Association (IWSA) is pleased to announce the publication of "Results from the WAGR Syndrome Patient Registry: Characterization of WAGR Spectrum and Recommenda…
Vicki Huff (right) and Cristy Ruteshouser, PhD, in the Huff Lab
August 2020
The Pablove Foundation announced it has awarded a “Powered by Pablove Grant” to Vicki Huff, scientific…
A new research study may lead to the prevention of Wilms tumor in children with a rare genetic disorder called WAGR syndrome. This first-of-its-kind study will focus on developing a chemoprev…
Using cell lines contributed by participants in the National Institutes of Health (NIH) study of Aniridia, WAGR syndrome, and 11p Deletions (2006-2014), researchers at the Johns Hopkins Univer…
In August 2019, IWSA representatives Shari Krantz, Kelly Trout, and Adam and Jenny Gunckle met with researchers and clinicians at Great Ormond Street Hospital in London. Discussions with Kathy…
WAGR patient Carol Larson visits Dr. Murphy and his lab at St. Jude Children’s Research Hospital in Memphis, Tennessee
By modeling a disease in the lab, researchers can test potential tr…
Ophthalmologists have found specific variations of the Pax6 gene may account for the different subtypes and severity degrees of this devastating eye disease. In this study, patients with WAGR…
Kelly Trout, BSN, RN Director, Research and Medical Advocacy International WAGR Syndrome Association
In early November 2019, more than three dozen scientists, clinicians, and patient…
In 2017, 30 families with children with WAGR syndrome aged 5-17 years participated in the PROMIS Sleep Study. This study was conducted by Christopher M.Forrest, MD, Children’s Hospital o…
Joan Han, MD
Lead Investigator Study of Aniridia, WAGR Syndrome, and 11p Deletions National Institutes of Health 2006-2014
Director Pediatric Obesity Program Le Bonhe…
