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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

1 Story from Volunteers, Donors & Supporters



Rating: 5

This foundation is the touch stone, the well spring, and the sustaining support for me and every family who have a loved one with CdLS.

Previous Stories

Professional with expertise in this field

Rating: 5

The CdLS Foundation attempts to reach out and support all families who are affected by this syndrome. They provide sources, networking, and personal attention to ensure that all has been done that can possibly be done with the financial reserves and man power they have to offer. From the tip of the spectrum in investigating scientific etiology to the other end of the spectrum offering personal compassion, concern and care to individuals, they give it 100%. The foundation utilizes every talent and gift they have in their arsenal to support those with CdLS and their families, medical providers, care givers, educational personnel and CdLS awareness . I know. I have been blessed to be the recipient of their services with my beloved CdLS child as well as the being involved in the support process as an educator. I know both sides and have been awed by and tremendously grateful for this foundation.