IWSA Announces Name Modification--WAGR/11p Deletion Syndrome

Tremendous progress has been made during the past several years in many areas of medicine and medical research.  One of the most exciting and productive areas is the field of genetics.  Identifying and pinpointing specific genetic abnormalities and deletions is already helping to understand the causes of diseases and syndromes, including WAGR Syndrome.   The short arm of the 11th Chromosome (11p) is the affected area for WAGR Syndrome.   

According to Dr Joan Han, MD, and lead researcher for the WAGR Syndrome/11p Deletion/Aniridia studies at the National Institutes of Health, "WAGR is classically thought of as having PAX6 and WT1 deletion, but 11p Deletion is a more encompassing diagnosis because it would include not just individuals with PAX6 and/or WT1 deleted, but also those for whom any chromosome 11 genes are deleted." 

Effective immediately, the International WAGR Syndrome Association is announcing the name modification--WAGR/11p Deletion Syndrome--to IWSA and WAGR families, other nonprofits and support groups, and medical, research and press organizations.  This modification is necessary to more accurately reflect the actual genetic description of the syndome.  We encourage all of our WAGR families to use this newly updated name--WAGR/11p Deletion Syndrome--effective immediately.  To help with this change and to maintain consistency, please join us in using the "new" name, noting the specific capitalization and spacing.  We feel strongly that this change will help to better clarify the genetic nature of WAGR Syndrome and hope you will all join us in making the change a swift and seamless process.  

If you have questions or comments, please contact IWSA President, Catherine Luis at catherineluis@msn.com or IWSA Health Consultant and Board Member, Kelly Trout at kellytrout@sbcglobal.net