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Cornelia de Lange Syndrome Foundation, Inc.

Rating: 4.97 stars   76 reviews 1,748

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

2016 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 are so grateful to have the resources of the Cornelia deLange Foundation for our son, Sammy. Sammy, who has mild CDLS , transitioned to Kindergarten this year. Our school district initially did a short evaluation, and placed him 6-1-1 classroom, of which we disagreed.
I read all the information from the Foundation, and sent Sammy's IEP for their experts suggestions. We challenged the school district placement with the feedback from the Foundation, as well as many of their publications.
Sammy is now in a regular Kindergarten class, with a personal aide, in a charter school. Although it has only been a few weeks, Sammy is doing well and wakes up every day ready to go to school.
Thanks to the support and information from the CDLS Foundation, we were able to advocate and give Sammy an opportunity to achieve his potential.

 
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Rating: 5 stars  

The CdLS Foundation is the only organization of its kind, providing support, education, and resources for families and professionals providing care for someone with Cornelia de Lange Syndrome. The Foundations is organized, and highly effective in meeting the needs of CdLS caregivers from around the world.

 
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Rating: 5 stars  

Excellent and informative organization. My sister has CDLS and they have provided support to our family for years now. My family still receives the pamphlets and information for fundraising. The information is key and helped us find the special doctors to treat her over the years. There has been a lot of progress since my sister was born 24 years ago.

 
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Rating: 5 stars  

My son, Michael, was born with Cornelia de Lange Syndrome. The foundation has helped us when we were struggling through the beginning years of adolescence. Their resources and newsletters help us keep connected to new information available. They have been extremely helpful.

 
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Rating: 5 stars  

Always there when I need them. They put me in touch with medical experts as well as other parents who are living the same life.

For the past 23 years, the CdLS Foundation has been responsive to my and my family's needs. And because they fund research and collect stories from other families whose child(ren) are affected with CdLS, we have some idea idea what to look for when our daughter has medical issues that she cannot tells us about-she has no language.

 
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Rating: 5 stars  

The Cornelia DeLange Foundation was a Godsend for us when our daughter was born in 2001
The Dr's knew a little about the diagnosis , however we need much more information. We were in the middle of the grieving process (yes grieving) that you have after your child is born differently abled, when I finally felt able to call the number given to us by our Dr. The voice of the woman who answered the phone was compassionate, kind, and confident. Information was sent out to us immediately. The foundation is an immense help to parents, caregivers and medical professionals that are navigating the process of this sometimes difficult and lonely path. I am very grateful for all the workers and other parents I have connected to through the foundation.

 
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Rating: 5 stars  

Ever since I have become apart of the foundation, I have been blown away. There are always people available to help with medical questions, treatment suggestions, and are will to collaborate with other doctors to educate them on conditions of our children. Anytime that I have needed to contact them, I always receive a response in a timely manner; typically right away. I could not have asked for a better foundation. They bring all of the families together to create one big family. It's just so great!

 
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Rating: 5 stars  

The CdLS Foundation was there for us in our darkest hours. We received the diagnosis of Cornelia de Lange Syndrome shortly after my second son was born. He was hospitalized for 4 months before he was able to come home. We reached out to the foundation once we got the diagnosis and was immediately welcomed. We received a wealth of information that we were able to pass along to my son's physicians. We were also put in contact with doctors though the foundation that were able to help guide his treatment while hospitalized. They are always available to answer questions that come up as our son gets older and faces new challenges. Without their care and support, we would not be able to say our family is thriving.

 
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Rating: 5 stars  

As soon as my grandson was born without forearms and only a thumb on each arm, he was diagnosed with CDLS. I found the Foundation online and contacted them. I was immediately given support and information about this syndrome. The person I spoke with assured me we were not alone and immediately sent out packets of information that showed resources available and information on what could possibly be the progress of my grandson. This foundation has continued to be a stalwart of support. We even won a scholarship to attend their national convention which provided a wealth of additional medical, social, and lifestyle information and support. Kudos to the CdLS Foundation! This photo is from the foundation's quarterly magazine that featured my grandson in Nov 2015.

 
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Rating: 5 stars  

The CdLS foundation provides wonderful support. It was a Godsend when our daughter was born, and remains a tremendously positive force in our lives.

 
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