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30 Reviews
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June 27, 2013

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June 27, 2013

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.

Ways to make it better...

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

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

More feedback...

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

November 28, 2012
1 person found this review helpful

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November 28, 2012
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.

More feedback...

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

November 28, 2012

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November 28, 2012

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!

More feedback...

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

November 20, 2012

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November 20, 2012

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.

More feedback...

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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5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

3 hours of volunteer time for this nonprofit will...

Spread the word about CdLS and save a child's life in the process, fundraise to help the Foundation provide assistance to families or provide education to healthcare professionals. Volunteer