Cornelia De Lange Syndrome Foundation, Inc.

Rating: 4.98 stars   40 reviews

Issues: Health

Location: 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

2014 Top-Rated Nonprofit
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EIN 06-1057497
800.753.2357
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Community Reviews

Rating: 5 stars  

When a family - because the family deals with it, not just the child - has a diagnosis of CdLS many have never heard of it before and have no idea where to turn. It is a big, scary medical world for special needs parents and it is frequently overwhelming. Thankfully, The CdLS is there to help navigate the insanity and provide answers. Not just answers, but personal answers for where ever a family may be located. I have never had an issue with anyone being too tired to help me, or even not knowing an answer. This foundation is a lifesaver for those who frequently find themselves adrift in the sea of confusion when battling a new diagnosis. Without them, I can't even imagine where I would be!

 
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Rating: 4 stars  

this is been one of the most helpful tools with my daughter to the years. I have appreciated the ease and use of the Site and the way it has developed through the years becoming better and better.

If I had to make changes to this organization, I would...

More Regional Clinics to help families get an idea better services.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

 
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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

Our grandson was diagnosed with CdLS at birth. Unlike other conditions, CdLS has only one source of accurate information and support in the entire country. It was the first call we made. There wasn't a voicemail to leave a name and number, it was a person.. Answering the phone.. After one phone call, our world stopped spinning out of control. We had hope, understanding, support and a true feeling that we were not alone. The entire staff remembers your family. They invest their heart not just their time. They support the entire family, not just my grandson. No matter what we are facing, we know whenever we need advice, they are there for us. They truly foster an environment of community and family. The CdLS Foundation walks our journey with us, every step of the way. We would be far less educated and alone, but because of the dedicated staff at the CdLS Foundation, we are armed with all the latest information, and someone to guide us.. When we are unsure of our next steps.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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Role: General Member of the Public
Rating: 5 stars  

LOVE the Cornelia De Lange Syndrome Foundation! They have helped me learn and understand more about my daughters syndrome! Also a great place to connect with other families!

Will you volunteer or donate to this organization?

Likely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

My son was diagnosed with Cornelia de Lange Syndrome shortly after his birth. Since that time, the Foundation has been a wealth of knowledge for my family and his healthcare providers. The Foundation not only provides the families of those living with CdLS a trust worthy resource of medical information it also provides love and support for the family and individual. At no charge to families, friends, doctors and supporters, the Foundation sends out newsletters. They also coordinate family gatherings. This Foundation truly exists to support CdLS.

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2012

 
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