International WAGR Syndrome Association (IWSA)

05/21/2026

The Family Meeting schedule at WAGR Weekend US 2026 is final! We've confirmed that Fay Tripp, Occupational Therapist at Duke Eye Center in Durham, North Carolina will present on "Low Vision and Assistive Technologies" and will have devices for families to explore.
If you are unable to join us in person, register to join the meeting on Zoom at https://us06web.zoom.us/meeting/register/QnfP5DWoR2a60tWuLDpeWQ
You can still register to join us for the weekend. Information is at https://wagr.org/WW26

05/11/2026

Watch the presentation given by the IWSA's Director of Research and Medical Advocacy, Kelly Trout, at the 8th European Aniridia Conference, hosted by Aniridia Europe and Aniridia Bulgaria. Both the IWSA and Aniridia North America collaborate with Aniridia Europe and its member nation organizations.

Presented at the 8th European Aniridia Conference, April 2026, Sofia, Bulgaria. The IWSA's Director of Research and Medical Advocacy Kelly Trout, presented ...

05/11/2026

JOIN US for WAGR Weekend 2026 in Raleigh, North Carolina, July 17-19. Information and the registration form https://wagr.org/WW26
If you're unable to attend, the Annual Family Meeting will be available "live" via Zoom. Register for the meeting https://us06web.zoom.us/meeting/register/QnfP5DWoR2a60tWuLDpeWQ You will have the opportunity to ask questions of IWSA representatives, and the ophthalmologist and nephrologist who will be presenting.
If you can't join the meeting, it will be recorded and available to view at a later date.

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.

04/27/2026

Join us for the IWSA's annual Family Meeting on Saturday, July at 9:30am (eastern time) via Zoom. Register here https://us06web.zoom.us/.../register/QnfP5DWoR2a60tWuLDpeWQ
For questions or issues registering for the Zoom, contact [email protected]
In addition to the IWSA annual update, messaging about the IWSA in Europe, and an exciting WAGR research update, this year's meeting will feature professionals addressing Aniridia in WAGR and Chronic Kidney Disease in WAGR. We will also have a WAGR Parent Panel--you can submit questions for other parents who will share their experiences.
The meeting will be recorded and available to view at a later date.
For more information about WAGR Weekend 2026, visit https://wagr.org/WW26 #2

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.

04/14/2026

WAGR Weekend US 2026, Raleigh, North Carolina
The Weekend schedule is set and the Cox Family is ready to welcome you!
To register and for more information, https://wagr.org/WW26
Questions? contact [email protected] or [email protected]

04/07/2026

We are pleased to announce our newly appointed Country Representative for Bulgaria. Elena Tsovena, mom to a young woman with WAGR, is available to welcome and communicate with families living in Bulgaria (and those who speak Bulgarian). For more information about Elena, and the IWSA's group of Country Representatives, visit https://wagr.org/About-Us-Country-Representatives

04/05/2026

Why is WAGR Weekend important to you? How was your first WAGR Weekend experience? Why do you think it is important for other WAGR families to attend? Please share your experiences and photos.
The IWSA's annual event is alternating years between the US and Europe. Recent WAGR Weekends were in: 2022 Atlanta, Georgia; 2023 Overpelt, Belgium; 2024 San Diego, California; 2025 Arundel, United Kingdom. Read about past weekends at https://wagr.org/past-wagr-weekends
WAGR Weekend 2026 will be held July 17-19 in Apex/Raleigh, North Carolina, hosted by the Tom Cox Family. Register here https://wagr.org/WW26
WAGR Weekend 2027 will be held in Norway, hosted by Andrea Dæhli and Simen Andresen.
Questions? contact [email protected]
photo captions: Group photos from 2025 UK and 2024 San Diego. Click on the photo for full view of the smiling attendees!

03/30/2026

Join us for WAGR Weekend 2026 in Raleigh, North Carolina, July 17-19. We have a great weekend planned with speakers who will discuss Aniridia and Kidney Health in WAGR--plus fun for the whole family.
Financial assistance is available for families who may need help with hotel costs, gas, etc. Apply confidentially by emailing [email protected] Deadline to apply is April 1st.
REGISTER at https://wagr.org/WW26
Questions? contact [email protected]

03/18/2026

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 clinically relevant and medically actionable information for inherited conditions in a standardized journal-style format, covering diagnosis, management, and genetic counseling for patients and their families. Each chapter in GeneReviews is written by one or more experts on the specific condition or disease and goes through a rigorous editing and peer review process before being published online.
The IWSA's Kelly Trout, Director of Research and Medical Advocacy, is one of the authors of the WAGR chapter.

01/30/2026

JOIN US FOR WAGR WEEKEND 2026
Register here https://forms.gle/ajUwXjNhvT6pCTyx7
Questions? contact [email protected] or [email protected]