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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Community Reviews

Rating: 5 stars  

I've known about the CdLS Foundation since my brother passed away many years ago from complications due to CdLS. I've had the privilege in recent years to serve the Foundation as a Board Member and part of the Research Committee and I am consistently amazed at the ability of the Foundation staff to drop everything to address the needs of those families affected by CdLS. I've consistently seen staff who know the face, name and needs of each family member affected by CdLS. In recent years the Foundation has continued to amaze me by their desire to strive to ensure each person affected by CdLS receives the highest level of care possible. Keep up the wonderful work!

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Rating: 5 stars  

I have been working with the foundation since my son was diagnosed 10 years ago. For the past 3 years I have been a board member and love every minute of working with my fellow colleagues and the foundation. They always go above and beyond to help families! Keep up the good work!

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Role: Professional with expertise in this field
Rating: 5 stars  

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.

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Rating: 5 stars  

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  

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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Role: Professional with expertise in this field
Rating: 5 stars  

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.

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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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Rating: 5 stars  

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  

My grandson has CdLS and as a result, the Foundation is critical to him and the family for information on the syndrome. It has provided us with education, referrals, and support every step of the way since his diagnosis when he was 5 months old. He is 6 years old now. His mother just returned from the national conference in California and was completely blown away by that experience. My son is hopeful that he will go next year with his son. I have learned so much from the wonderful people of the foundation, they are Always there for me.

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

Have a satellite office closer to where I live. I know, I know, that sounds selfish of me doesn't it?

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

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Rating: 5 stars  

The CdLS Foundation has been great resource as have the medical professionals who advise the foundation. The conference I attended provided a wealth of information and understanding of the disorder. A life raft when one is at sea.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

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