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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 Story

Client Served

Rating: 5

The CdLS Foundation has helped my family by bringing families affected by CdLS together, by providing support at any time, and by funding important research for a rare condition that does not get a lot of attention otherwise. They are personable and knowledgeable and encouraging. Thank you!