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WAGR Syndrome Research at CHOP Supported by Miranda's Mission

John and Beth Morris are parents of two daughters--Miranda, age 7 (WAGR syndrome) and Juliet, age 5. Several years ago, the Morrises founded Miranda's Mission, a nonprofit family foundation b…

2020 Impact Report: Accomplishments in Challenging Times

2020 was a year like no other. COVID-19 created worldwide challenges. The IWSA response to unprecedented challenges and obstacles was to modify plans and find creative ways to support familie…

WAGR story wins FINDACURE Student Voice Competition

Findacure's Student Voice Competition is an annual, international essay competition that focuses on raising the profile of rare diseases within the medical field, particularly with medical st…

Stimulating Research, Producing Real Results

The mission of the IWSA is to "Promote Awareness, Stimulate Research, and Support Families affected by WAGR syndrome. What does it mean to "stimulate research"? While the IWSA does not fund r…

IWSA Participates in Russian Rare Disease Conference

Collaboration is innovation: Prospects and news in the field of WAGR syndrome research The Forum: "Innovative therapy in the field of rare diseases and biotechnology" recently took place in Mo…

IWSA Creates 2021-2023 Strategic Plan

In late 2017, the IWSA held a Leadership Retreat to create a new vision for the future of the organization. As a result, the IWSA Strategic Plan 2018-2020 was created and used as a r…

IWSA Supports Gene Vision

A new website, Gene Vision, launched on December 1st. It was developed by Professor Mariya Moosajee and Dr Alex Yeong, and supported by Dr Peter Thomas, Director of Digital Innovation at Moo…

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…

EVENTS

Aniridia Europe Webinar

On Aniridia Day on June 21st, Aniridia Europe hosted an excellent webinar titled “Managing aniridia: dos and don’ts from infancy to adulthood”. The speakers, Prof. Dominique…

Dutch Family Participates in Medical Center Grand Rounds

The University Medical Center/WKZ Utrecht, Netherlands, recently conducted a virtual grands rounds and invited Jan Jongerius and Chantal Dupree to participate and provide a presentation. The…

Rare Disease Day 2021

IWSA International Rare Disease Day Activities Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the gen…

Save the Date--2021 Virtual WAGR Weekend

Due to COVID-19 and continued concerns for the health and safety of IWSA families around the world, the IWSA will not host in-person events this summer. The hope and plan is to meet in perso…

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…