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Phone: 800.753.2357
302 West Main Street
#100

Avon
Connecticut 06001
USA
Website
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Someone who had 3 hours of volunteer time could: Spread the word about CdLS and save a child's life in the process, fundraise to help the Foundation provide assistance to families or provide education to healthcare professionals.

Geographic areas served: United States

Programs: Publications, family service support phone lines, national family conferences, Foundation sponsored family gatherings across the country

Mission:
Reaching Out, Providing Help and Giving Hope.


Cornelia de Lange Syndrome is a little-known genetic birth defect that causes children to develop slowly, both mentally and physically. With the help of hundreds of volunteers, the Foundation is able to provide personal support to every family who requests it.

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32 Reviews
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Average rating:
1234.968755
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08/09/14
My grandson has CdLS and as a result, the Foundation is critical to him and the family for information on the syndrome. It has provided us with education, referrals, and support every step of the way since his diagnosis when he was 5 months old. He is 6 years old now. His mother just returned from ... more »
08/09/14
The CdLS Foundation has been great resource as have the medical professionals who advise the foundation. The conference I attended provided a wealth of information and understanding of the disorder. A life raft when one is at sea... more »
08/07/13
We have been part of the CdLS Foundation from it's earliest days. With a tiny newborn in 1977 and no information, we groped our way through each day. When the CdLS Foundation began in 1981 by a group of parents scattered across the country-hope, support, information and advocacy began for us. ... more »
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Spread the word about CdLS and save a child's life in the process, fundraise to help the Foundation provide assistance to families or provide education to healthcare professionals. Volunteer

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