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Review for Cornelia de Lange Syndrome Foundation, Inc., Avon, CT, USA

Rating: 5 stars  

My son, David, was going through a very rough time several years ago. I talked at length with the folks from the foundation. They hooked us up with a national expert who then spoke directly with David's local doctor. The foundation is a central place of up to date information, support, and connections. More recently when my son went into the ER, the resident physician stated that he didn't know that much about CdLS and he wanted to look it up before he decided on any more treatment. Because of the foundation he came back to say that even though it looked like a behavioral episode, a complete medical work up was indicated because behaviors are the result of underlying medical conditions. David had a medical problem which required surgery that night. The foundation is very responsive to people's concerns, and questions.

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Very Well

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Role:  Client Served