International WAGR Syndrome Association

If your child is an infant and has recently been diagnosed, you are probably feeling overwhelmed right now.  The baby you eagerly anticipated only a short while ago is suddenly a child with a frightening diagnosis.  His future may seem dark and full of unknowns.  Your child with WAGR syndrome is first and foremost a child.  In time, he will smile and laugh, he will learn and grow and enjoy life.  In time,  you will too.

Your child with WAGR syndrome is also an individual.  It is likely that he will have some, but not all of the symptoms you will read about.  Understanding the spectrum of features that may occur with WAGR syndrome is the key to providing your child with the specific forms of help that he or she may need.  Do not expect to learn all of these at once.  In time, your child will show you what he needs, and you will learn how to help him.

If your child is older, you are already aware of many of the challenges and joys of raising a child with this condition.  We hope the information on our website will be helpful to you, too.

Good medical care and individualized education are very important for people with WAGR syndrome.  Please feel free to share these materials with the professionals who work with your child.

The good news about WAGR syndrome is that individuals who have this condition can live happy, purposeful, fulfilling lives.  They enrich the lives of everyone around them and the world is a better place for having them here.  The Families of International WAGR Syndrome Association are living proof of this. 

We look forward to sharing our help and our hope with you!