WAGR Syndrome is a rare genetic syndrome caused by the deletion of part of chromosome 11 resulting in Wilms tumor (a tumor of the kidneys), Aniridia (absence of the colored part of the eye, the iris), Genitourinary anomalies, and mental Retardation.
|(A) Aniridia||No or undeveloped irises|
|(W) Wilms Tumor||Wilms Tumor in approximately 50%|
|(G) Genitourinary Anomalies||Genitourinary anomalies in males and females|
|(R) Developmental Delays||Development Delays vary|
Check out this article about Gabriel Sirr, a Michigan boy living with WAGR Syndrome who was recently able to see for the first time. His favorite color? Green!
I am the parent of a adult female with WAGR syndrome. We are currently enrolled in a research study at the National Institutes of Health. I'm also one of the co-founders of the the IWSA.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
This is a very rare genetic disorder.
It can also be referred to as 11p deletion syndrome.
The International WAGR...
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