Cornelia de Lange Syndrome Foundation, Inc.

Rating: 4.96 stars   51 reviews

Address:

302 West Main Street #100 Avon CT 06001 USA

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.

Geographic areas served:

United States

Programs:

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

2015 Top-Rated Nonprofit
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More Info

800.753.2357
http://www.CdLSusa.org

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Reviews for Cornelia de Lange Syndrome Foundation, Inc.

Rating: 5 stars  

We could not have survived the last 30 years without the friendship, support, advice so generously and compassionately offered from the staff at the CdLS foundation. Even with Director and employee changes through the years the CdLS foundation employees are dedicated, caring and top notch! I'd give them 10 stars!

 
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Rating: 5 stars  

Wonderful and helpful My so has Cdls and has guided me greatly along the way over 14 years

 
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Rating: 5 stars  

The CdLS Foundation has been a very helpful resource sine my daughters diagnosis. They have connected me with other parents, provided me with reputable information and have also been a great resource when discussing a treatment plan with our pediatrician.

 
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Rating: 5 stars  

1 person found this review helpful

The CdLS foundation was a wealth of information when our twins were diagnosed, and have provided so much guidance over the years. I can't imagine being on this crazy frightening journey without their support.

 
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Rating: 4 stars  

1 person found this review helpful

The foundation has given us information on our little love support and guidance. Thank you

 
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Rating: 5 stars  

1 person found this review helpful

The foundation is near and dear to us. They helped us even before our daughter diagnosed. They are now family. They are always there to listen and help no matter when.

 
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Rating: 5 stars  

1 person found this review helpful

The foundation is completely transparent with their finances. The staff goes above and beyond to assist families. The foundation works closely with the leading doctors and researchers involved regarding the syndrome. They help connect families with other families since the syndrome is very uncommon.

The staff at the foundation are lifesavers and a valuable resource for families and professionals.

 
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Rating: 5 stars  

2 people found this review helpful

The Foundation has been a wonderful source of information, support, and encouragement. They have put me in touch with experts who understood what we were going through. The 'ask the expert' section of their website has been very helpful.

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

The CdLS Foundation has helped our family in so many ways. They are always available to answer questions and help our doctors, who are mostly unaware of specific CdLS challenges, find answers. We would be lost without the CdLS Foundation!

 
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Rating: 5 stars  

1 person found this review helpful

Hey, anyone who's reading this, if you've never had a loved one with a rare medical condition, I don't know if you can fully appreciate just how important the Cornelia de Lange Foundation is to the people they serve, but I'll try to convey as much as I can. CdLS is very rare, so rare that very few doctors, seemingly, have even HEARD of it, and misdiagnoses are way too frequent. Failure to thrive, our granddaughter was labeled, in a massive medical shrug. WORD NEEDS TO GET OUT about these rare disorders, so people don't have to struggle to deal with the unknown. Once we found a doctor who had a clue, and got a diagnosis, and we knew what to research, we found the Foundation, and their help cannot be overstated. They operate as clearinghouse for crucial info, organizers of support gatherings, encourage the research of specialists in the field, and coordinate outreach groups so some of the estimated 20,000 as yet undiagnosed CdLS folks can be helped, too. We know where to turn! CdLS Foundation!!!!

 
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Rating: 5 stars  

1 person found this review helpful

The Cornelia de Lange Syndrome (CdLS) Foundation is an amazing foundation full of people who truly care and are making a difference everyday! My family was connected to the CdLS Foundation upon the birth of our first child, who was diagnosed with CdLS. One of the largest obstacles we encounter is CdLS is rare, it is hard to find doctors who are familiar with the syndrome and it is even harder to find other families like us. The CdLS Foundation has helped us to educate our local doctors, connected us to doctors who specialize in CdLS, they support research opportunities and continue to keep us aware of current research, they are always there to offer support and through the CdLS Foundation we have found other families of CdLS like us. The CdLS Foundation offers light during the dark and scary times, and continues to offer hope, understanding and opportunities for the future. The Cornelia de Lange Syndrome Foundation is making a difference in so many ways!!!!

 
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