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

Rating: 5 stars  

Our grandson was diagnosed with CdLS at birth. Unlike other conditions, CdLS has only one source of accurate information and support in the entire country. It was the first call we made. There wasn't a voicemail to leave a name and number, it was a person.. Answering the phone.. After one phone call, our world stopped spinning out of control. We had hope, understanding, support and a true feeling that we were not alone. The entire staff remembers your family. They invest their heart not just their time. They support the entire family, not just my grandson. No matter what we are facing, we know whenever we need advice, they are there for us. They truly foster an environment of community and family. The CdLS Foundation walks our journey with us, every step of the way. We would be far less educated and alone, but because of the dedicated staff at the CdLS Foundation, we are armed with all the latest information, and someone to guide us.. When we are unsure of our next steps.

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Role:  General Member of the Public