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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…

Care Management Model: Providing Hope on Rare Disease Day 2022

RARE DISEASE DAY is a celebration of hope for people with rare disorders. The IWSA is celebrating Rare Disease Day 2022 by sharing the recently published Care Management Model and Screening P…

Promising Aniridia Research Results: Patient-friendly summaries available

Exciting research was presented at the 2021 Aniridia North America Symposium: PAX6, Aniridia, and Beyond. Nearly 100 researchers, clinicians, and patient organization representatives from aro…

IWSA Teams with VFT

The IWSA and Vision for Tomorrow Foundation (VFT) executed a Memorandum of Understanding (MOU) in November 2021. The IWSA and VFT share common goals and objectives and are pleased to formalize…

Care Management Recommendations Published for WAGR Spectrum

The International WAGR Syndrome Association (IWSA) is pleased to announce the publication of "Results from the WAGR Syndrome Patient Registry: Characterization of WAGR Spectrum and Recommenda…

WAGR Syndrome Patient Registry Update

WAGR Syndrome Patient Registry Update: New Section on COVID-19 The questionnaire for the IWSA WAGR Syndrome Patient Registry has been updated to include questions on COVID-19. This short ser…

EVENTS

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…

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…

US WAGR Weekend 2022

US WAGR Weekend 2022 Get out your calendars out and start planning for US WAGR Weekend 2022, scheduled for July 8-10 in Marietta, Georgia (a suburb of Atlanta). The Galloway family will ho…

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…