“Risks of Kidney Disease in WAGR Syndrome” was presented at WAGR Weekend 2026 by Dr Keri Drake, Pediatric Nephrologist, UT Southwestern Medical Center and Children’s Medical…
“Low Vision Rehabilitation: An Overview” was presented at WAGR Weekend 2026 by Fay Tripp, Occupational Therapist, Vision Rehabilitation & Performance, Duke Eye Center, Durham,…
Two important WAGR-related studies have been recently published. The IWSA is grateful for the important work of Jennifer Kalish, MD, PhD, and her team at the Division of Genetic and Genomic Me…
The IWSA is pleased to share that for the first time ever, WAGR is included as its own chapter in GeneReviews. GeneReviews, an international point-of-care resource for clinicians, provides cl…
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…
Check out the 2025 Impact Report. Thank you to everyone who donated, volunteered, and supported IWSA families.
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…
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…
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…
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 2027 will be hosted by the IWSA and WAGR parents Andrea Daehli and Simen Andresen, and their family and community. Join fellow WAGR families for a weekend of fun, education, and…
Hosted by the Cox Family WAGR Weekend 2026 was held in Raleigh, Apex, North Carolina. It was hosted by the Cox Family and supported by a wonderful group of supporters and volunteers. Families…
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…
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…
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…
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…
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…
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…
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