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WAGR Awareness Day 2020

On November 13th, the IWSA celebrates WAGR Awareness Day. This year, the IWSA international community participated enthusiastically, making the 4th Annual WAGR Awareness Day 2020 a huge succ…

Wilms Tumor Research Funded by Pablove Foundation

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…

Welcome to the New Website

The IWSA is proud to unveil the new website that has been updated and redesigned to provide efficient access to the most current and accurate information available about WAGR syndrome. The im…

IWSA Rep Nominated for RADIORG Award

Congratulations to Linda Van de Sande for being nominated for the Edelweiss Awards 2020. Linda was nominated in the Remarkable Patient/Parent Advocacy category in Radiorg, Rare Disease Organis…

Progress Update: Wilms Tumor in WAGR Syndrome Mouse Research

Following the Global Genes workshop in Houston, Kelly and Shari visited the MD Anderson Cancer Center at the University of Texas. Vicki Huff, Professor, Department of Genetics and Director, CC…

Global Genes Rare Disease Patient Registry Workshop

In early February Kelly Trout, IWSA Director of Research and Medical Advocacy, and Shari Krantz, Executive Director, attended a Global Genes DIY Workshop in Houston, Texas. The workshop focuse…

Netherlands Family Attends Rare Disease Conference

Jan Jongerius and Chantal Dupree represented the IWSA at the first symposium of “Zeldsamen” (acronym of “rare” and “together”) in the Netherlands. The event…

EVENTS

WAGR Awareness Day 2020

On November 13th, the IWSA celebrates WAGR Awareness Day. This year, the IWSA international community participated enthusiastically, making the 4th Annual WAGR Awareness Day 2020 a huge succ…

Aniridia Russia to Host Webinar on WAGR Syndrome Awareness Day

On November 13, Aniridia Russia is hosting a Zoom meeting about WAGR syndrome that will include doctors and families of individuals with WAGR syndrome. This meeting will be held on the 4th a…

Georgia Community Supports the IWSA


Ross Crumpton with Teigan and Troy Galloway and their daughter Phabulous Phoebe at the Tantrum Brewing Company in Cleveland, Georgia During Childhood Cancer Awareness Month in September,…

Online Popcorn Fundraiser

It's popcorn season again! This year we are excited to announce that not only do we have 3 amazing families selling popcorn, but it is now also available online (ships within the USA only). Yo…

Be My Sunshine

Awareness of WAGR syndrome and Aniridia in a small country like Belgium is limited. IWSA Board member and mom to Dylan, Linda van de Sande recognized the need for raising awareness and funds…

Hanover Family Fitness

In early 2020, big plans were being made in Hanover, Pennsylvania for a fundraising event in honor of Hayden Dell. Hayden is a high school student and regular client at Hanover Family Fitness…

Popcorn Fundraiser

Courtney Collette and her team in Idaho sold an amazing 516 bags of Zebra popcorn in 2019 for an IWSA fundraiser. The yummy treat is the Popcornoplis flavor Zebra--caramel corn flavored with…

WAGR Syndrome Patient Registry Campaign 2020

In August 2020, the IWSA hosted a campaign to increase participation in the WAGR Syndrome Patient Registry. We created a series of videos with parents, physicians, researchers, and children/a…

WAGR Weekend 2020 Conference: Education, Research, Support

Hosted by the Morris Family Virtual WAGR Weekend 2020 was held on August 1, 2020 live from Philadelphia, Pennsylvania. Forgoing the annual in-person US-based conference due to COVID-19, th…