Cornelia De Lange Syndrome Foundation, Inc.
Rating: 4.98 stars 40 reviews
Location: 302 West Main Street #100 Avon CT 06001 USA
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.
Geographic areas served: United States
Programs: Publications, family service support phone lines, national family conferences, Foundation sponsored family gatherings across the country
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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 who have expertise in CdLS. I highly recommend it.
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.