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2017 Top-Rated Nonprofit

Cornelia de Lange Syndrome Foundation, Inc.

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases Research, Health, Health (General & Financing)

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.

Target demographics: individuals with CdLS and related diagnoses

Direct beneficiaries per year: 5,300 individuals with CdLS and their family members

Geographic areas served: United States

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

Community Stories

2 Stories from Volunteers, Donors & Supporters

Frank L.


Rating: 5

Friends of ours has a daughter with cdls. This foundation has been a great support and resource for them. They are amazing!!

1 Kevin46


Rating: 5

The dedication and hard work of CDLS Foundation's staff is inspiring. To witness first hand, the love and support that this team shows to each of these families is motivation enough to give to this great cause. I've witnessed first hand how a foundation member works around the clock and throughout weekends and vacations to ensure that they are personally doing their best to help all those affected. There is no greater way to explain how much they care.