An amazing operation that helps provide services and awareness to families affected by Cornelia de Lange syndrome (CdLS) a rare genetic disorder that affects growth learning and almost every system in the body. This small organization provides services to over 2000 affected families, organizes conferences, raises money for research and is a great resource to families, professionals and other organizations. The CdLS Foundation should be the model of how rare disease foundations should be run!!!
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.