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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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Average rating:
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10/15/14
I have had the privilege of working with the foundation for a number of years and they never fail to go above and beyond in the service of patients with CdLS and their families. The convention is a fantastic educational opportunity as well as a venue to interact with other families and providers ... more »
10/05/14
Hey, anyone who's reading this, if you've never had a loved one with a rare medical condition, I don't know if you can fully appreciate just how important the Cornelia de Lange Foundation is to the people they serve, but I'll try to convey as much as I can. CdLS is very rare, so rare that very few ... more »
10/05/14
When a family - because the family deals with it, not just the child - has a diagnosis of CdLS many have never heard of it before and have no idea where to turn. It is a big, scary medical world for special needs parents and it is frequently overwhelming. Thankfully, The CdLS is there to help ... more »
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