International WAGR Syndrome Association (IWSA)

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International WAGR Syndrome Association (IWSA)

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The IWSA represents more than 350 members in 45 countries around the world

WAGR is an acronym which stands for the following: W--Wilms Tumor, A--Aniridia, G--Genitourinary abnormalities, R--Range of Developmental delays.

10/29/2026

💙 MOVE FOR WAGR! 💙

We’re off to a fantastic start! We’ve already raised $8,000 of our $26,000 goal! A huge THANK YOU to everyone supporting our WAGR Awareness Campaign! Now let’s keep the momentum going! 💪

🏃‍♀️ Move for WAGR
💙 Donate if you can
📢 Share this post
👫 Challenge a friend to join!

LET’S MOVE TOGETHER FOR WAGR! Every step counts!

https://wagr.org/donate or use the QR code on the poster

10/05/2026

🌟 We're ready for our WAGR Awareness Campaign 🌟

When families across the world move together, every step, every mile and every fundraiser helps strengthen our community and helps support the IWSA's mission. 🙏💙

Let us know what your plans are. 🫶

www.wagr.org/moveforwagr2026

09/29/2026

We're getting ready for WAGR Awareness Day...
Stay tuned for more information!

https://wagr.org/MoveforWAGR2026

09/13/2026

For our UK families

During our online meetup earlier this year to mark Aniridia Day and Father’s Day, we were given a preview of an important new research project. Harriet, an MSc Genetic Counselling student fro…

09/12/2026

The IWSA has a YouTube channel that features numerous videos--WAGR Weekend presentation and a lot more! Subscribe and check it out!

Welcome to the International WAGR Syndrome Association. We are a 501(c)(3) nonprofit organization with the mission of promoting awareness, facilitating research, and supporting families affected by WAGR Syndrome. WAGR stands for W--Wilms tumor, about 50% of individuals with WAGR develop this kidney....

09/01/2026

Barbara Poli, President Aniridia Europe shares information about the importance of patient involvement in Restore Vision projects

08/02/2026

This is important information for WAGR families living in the United States.

New Medicaid work requirements could put rare disease patients’ coverage at risk. NORD CEO Pamela Gavin explains how families can prepare.

08/02/2026

Something really exciting is happening right now in the UK. Friends of WAGR parents Lizzie and Matt Pullen are cycling around the country to raise awareness of WAGR syndrome and to raise funds for the IWSA!. They will be cycling up to 100 miles per day and making stops to meet WAGR families along the way. First stop yesterday was at the Port of Dover for a meet up with mum Vicki and daughter Megan.
Let's help them meet their goal of raising £5000 for the IWSA!
https://www.justgiving.com/page/ukrideforwagr?utm_medium=FR&utm_source=CL

07/25/2026

WAGR Weekend 2027 will be held in Norway, August 6-8, hosted by Andrea Daehli and Simen Andresen. We hope to see you there! More details to come soon!

07/25/2026

WAGR Weekend 2026 Family Meeting presentations are available for viewing on the IWSA's YouTube channel https://www.youtube.com/playlist?list=PLRzacuoNSFmg
The meeting was led by IWSA Board Chair Joh Morris and we learned about chronic kidney disease in WAGR from Pediatric Nephrologist Dr Keri Drake, about Aniridia in WAGR from ophthalmologist Dr John Freeman and more.

Address

Montgomery Village, MD
20886

Website

http://www.wagr.org/

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