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Beth68

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Cornelia de Lange Syndrome Foundation, Inc.
November 28, 2012

The Cornelia de Lange Syndrome Foundation has been an important part of our lives since our son was diagnosed at birth with CdLS 21 years ago. They have been our only source for accurate and current information about all aspects of the syndrome. They have provided us a sense of family in what can feel like a very isolating life. They have been our lifeline through the darkest days and helped us through so many challenging times. They are professional but warm and caring. They continue to actively research all aspects of the syndrome so that families can make informed decisions for their loved ones.

More feedback

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?

2012

MY ROLE:
Board Member