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How we born

When I discovered that the child I was expecting was suffering from this syndrome, I looked for information everywhere but I could not find any because there was no association regarding and the medical literature only described the most serious cases and instead I discovered life beyond the disease.

Thanks to social networks I discovered other parents and affected people around the world who described the disease as something different and so after just two years after our son was born, we founded this association with the aim of becoming an international reference point.

And we succeeded.

Sylvie Renault

President & Founder of CESI onlus

Help CES Children

Being a reference point – to hearken and debate – for all people affected with CES or similar malformations.


Fundraising in order to spread a worldwide awareness of the syndrome.

encourage Research

With the aim of identify causes and specific treatments for the most recurrent characters.

How You Can Help Us

Call us at +39 392 92 17 140  to make a donation and become a special donor.

Direction Staff

Sylvie Renault

Sylvie Renault

Founder & President

Alessandro Mocci

Alessandro Mocci

Vice President

Désirée Renault

Désirée Renault

Head of Psychological Support Service

Become A Volunteer

You can help us online or offline. Write us for more information.