November 28, 2012
The Cornelia de Lange Syndrome Foundation has been an important part of our lives since our son was diagnosed at birth with CdLS 21 years ago. They have been our only source for accurate and current information about all aspects of the syndrome. They have provided us a sense of family in what can feel like a very isolating life. They have been our lifeline through the darkest days and helped us through so many challenging times. They are professional but warm and caring. They continue to actively research all aspects of the syndrome so that families can make informed decisions for their loved ones.
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MY ROLE:Board Member