The International WAGR Syndrome Association represents more than 250 families from 44 countries. There is no cost for families to join the organization. W–A-G-R stands for the most prominent of conditions associated with the syndrome:
Wilms tumor (kidney cancer)
Aniridia (an eye condition that can lead to blindness)
Genitourinary abnormalities
Range of developmental delays
Each family received the devastating diagnosis of WAGR syndrome for their child and felt some combination of grief, isolation, and fear. And because WAGR is an ultra rare genetic syndrome–1 in one million births–there is little chance there are other families nearby for support and information or local medical professionals experienced in caring for individuals with WAGR syndrome. With 50% of WAGR individuals developing Wilms tumor and a large percentage battling glaucoma, blindness, and other serious vision issues, awareness and information are extremely important!
Our Mission is to promote awareness, facilitate research, and support families affected by WAGR syndrome Awareness maintaining the world's only website dedicated to WAGR syndrome,
www.wagr.org, and attending and presenting at conferences and meetings
Research developing a research-ready community and collaborating with researchers and clinicians to study the syndrome to develop treatments and therapies to improve quality of life
Support providing information and support to families, hosting a caring and supportive community, and holding annual family meetings for families to support and spend time with others who understand their challenges
WE COUNT ON THE GENEROSITY OF DONORS to help us support our families!