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Cornelia De Lange Syndrome Foundation, Inc.

Rating: 4.96 stars   51 reviews 1,632

Nonprofit Issues:

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  

When I call the Foundation, I couldn't believe the kindness and sensitivity AND help that the staff at the Foundation provided. I know that experience continues to be true today for new families. The Foundation is a font of knowledge about this syndrome...accurate and up-to-date information so helpful and needed by caregivers and professionals. The Foundation builds important relationships with the medical and professional communities to advance understanding of the syndrome to ensure appropriate treatments are provided. And the Foundation and families support important research by professionals to further even greater understanding of CdLS. I don't know what we and others would do without this important organization.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2015

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

When my daughter was 5, I located literature that said life expectancy for individuals with CdLS was 5 years old. That was frightening news and fortunately someone led me to the Foundation. From Foundation staff I learned that this information was very dated and within a week was on my way to a CdLS Conference to learn all I could. There I met the most wonderful staff and doctors who were a wealth of information on the syndrome and helped me understand important screenings and treatments that I should pursue for my daughter. From that first welcoming call, I've felt the staff had my daughter's best interests at heart and I know they convey that same concern and caring to all who call. They indeed provide a lifeline when people most need one.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

 
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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

This is a tremendouslyrics supportive organization for children with CdLS and their families.

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

I am an Auntie of a very special boy! The foundation has been fantastic in helping us understand and navigate life!

 
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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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