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Sisledge96

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2 reviews

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

Rating: 5 stars  

The staff are awesome and go out of the way to assist you when you call. They also offer all kinds of medical information about this syndrome which can vary in each individual who has the syndrome.

Role:  Client Served
 

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

Rating: 5 stars  

As soon as my grandson was born without forearms and only a thumb on each arm, he was diagnosed with CDLS. I found the Foundation online and contacted them. I was immediately given support and information about this syndrome. The person I spoke with assured me we were not alone and immediately sent out packets of information that showed resources available and information on what could possibly be the progress of my grandson. This foundation has continued to be a stalwart of support. We even won a scholarship to attend their national convention which provided a wealth of additional medical, social, and lifestyle information and support. Kudos to the CdLS Foundation! This photo is from the foundation's quarterly magazine that featured my grandson in Nov 2015.

Role:  Client Served