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

Rating: 5 stars  

The CdLS has been an ongoing source of support and useful information since my son’s diagnosis. I was initially surprised by the thorough, and quality publications they immediately mailed me. The website is a resource I turn to often for different issues as they arise. I have called the foundation on many occasions to ask for guidance. They have contacted an expert that has made suggestions for how to proceed with our local medical team, and shared helpful ideas for the unique challenges we face. I am thoroughly impressed with how well run the foundation is. We contribute as we can, as I know they dollars are well spent. They somehow manage to run it lean, and still provide outstanding printed, digital, and Human Resources to this population and their families.

Role:  Donor