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New Diagnosis

Everyone in the CSS community has a story of how they searched for or were found by a diagnosis.

Here is the story of one family

We look forward to hearing your story and sharing ours.

Welcome. We have assembled a few resources for families with a new diagnosis. Please complete this web form and we’ll be in touch.

Most new families have a lot of questions, so we’ve put together a FAQ document with answers to some common questions. 

Family affected by Coffin-Siris Syndrome
Family affected by Coffin-Siris Syndrome