Choose Your Language

 Updates and Coming Events

Sign up for News & Events

News

Elena Tsoneva named Country Representative for Bulgaria

The IWSA is pleased to announce that Elena Tsoneva has been named Country Representative for Bulgaria. Elena is the mother of a daughter with WAGR and has been active with the IWSA and the An…

2025 Impact Report

Check out the 2025 Impact Report. Thank you to everyone who donated, volunteered, and supported IWSA families.

IWSA awarded 2026 PLATINUM Seal of Transparency

The IWSA has been awarded the CANDID/Guidestar 2026 PLATINUM Seal of Transparency. This award illustrates that the IWSA is transparent in its organizational and financial activities, and pro…

IWSA and ANA Working Together

Aniridia North America (ANA) and the Int’l WAGR Syndrome Association have formalized their working relationship by executing a Memorandum of Understanding (MOU). This MOU establishes a…

2023 Starts with Changes at the IWSA

John Morris Named Chair, IWSA Board of Directors The International WAGR Syndrome Association is pleased to announce that John Morris has been elected to serve as Chair of the organization's B…

WAGR AWARENESS DAY 2022 We're Stronger Together

It's that time of year again! The special day--November 13--that the WAGR syndrome community promotes awareness of our ultra rare syndrome and celebrates the special individuals and families…

Understanding the New Screening Guidelines for Kidney Health and Wilms Tumor in WAGR Spectrum

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…

Register Today: WAGR Weekend 2022 In Person and Virtual Meeting

The IWSA is pleased to host WAGR Weekend 2022 in person for the first time since 2019! AND the Saturday meeting will also be offered via Zoom. The Galloway Family will host the weekend event…

2021 IWSA Impact Report: Review of a Very Productive Year

Check out the 2021 Impact Report. The first-ever Care Management Guidelines were published, WAGR Weekend was attended by 181 individuals, and many more exciting and encouraging things took pla…

EVENTS

West Coast Designer Bag Bingo

Join the fun and support the IWSA while playing Bingo in the San Diego, California area. On May 3, the Volk/Vaughan families will once again be hosting an afternoon of fun and games. To purch…

WAGR Weekend 2026: Raleigh, North Carolina

Join the IWSA and WAGR families for a weekend of fun, education, and friendship, July 17-19 in Raleigh, North Carolina, USA. Hosted by the IWSA and the Cox Family. Registration is now…

Celebrate Rare Disease Day on Feb. 28!

On February 28, the world celebrates the more than 300 million people living with rare diseases. About 500 of them have WAGR syndrome. WAGR syndrome is one of them...and an ultra rare one! R…

2025 WAGR Awareness Day

It's that time of year again! The special day--November 13--that the WAGR syndrome community promotes awareness of our ultra rare syndrome and celebrates the special individuals and families…

2025 WAGR Weekend

Hosted by the Colhoun Family WAGR Weekend UK 2025 was held in beautiful Arundel, United Kingdom. It was hosted by the Colhoun Family, parents Michelle and Aaron along with their children Grace…

2024 WAGR Awareness Day

It's that time of year again! The special day--November 13--that the WAGR syndrome community promotes awareness of our ultra rare syndrome and celebrates the special individuals and families…

2024 WAGR Weekend

Hosted by the Volk Family WAGR Weekend 2024 was held in sunny San Diego, California. It was hosted by the Volk Family and supported by a fantastic group of volunteers. IWSA families were tre…

WAGR AWARENESS DAY 2022 We're Stronger Together

It's that time of year again! The special day--November 13--that the WAGR syndrome community promotes awareness of our ultra rare syndrome and celebrates the special individuals and families…

WAGR Weekend 2022 Meeting Agenda Set

You won't want to miss the Family Meeting at WAGR Weekend 2022. The agenda is set and the IWSA is excited to share it! In addition to learning about IWSA activities and accomplishments, ther…