p63 EEC Syndrome

p63 EEC International Network Word Communication Onlus

Ectrodactyly - Ectodermal Dysplasia - Cleft Syndrome

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chi siamo

Objetivo de esta página web es ofrecer informaciones útiles a todos aquellos que tienen seres queridos que sufren de la síndrome ECC, poner en contacto a las familias, compartir las experiencias, ofrecer indicaciones sobre los Centros de Excelencia y proveer referencias Nacionales e Internacionales.

¡No hay nada raro cuando se conoce!

ASOCIACIÓN INTERNACIONAL SÍNDROME EEC

Para obtener informaciones útiles, para reunir a las familias.

Para compartir experiencias, para informar sobre los centros de cura.

Desde Italia al resto del mundo, ¡hecho para hablar con nosotros de ti!

Statements

On Italia1, WILD speaks about Giulia Volpato.

The first international conference on the EEC syndrome, with major Italian and international experts.

In this video, our dental specialist speaks about the effects of LPS in relation to the EEC syndrome .

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Rareducando

The RAREDUCANDO project envisages the awareness of the children about rare diseases. What are rare diseases? What to do if you have a rare disease? What is E.E.C syndrome? Why is scientific research important? Why do we talk about prevention and early detection? What are the safeguards for a person with a rare disease? All questions to which we try to give an answer

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CSMR
Service Center for Rare Diseases

The objective is to make the CMRS a concrete point of reference for people with rare diseases, supporting the social emergency thanks to motivated operators. Support us ...

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Stammi Vicino Project
Podere Sant Agata

There is a place where children with rare diseases are becoming children again. A space surrounded by nature specially designed to accommodate for holiday periods the families of sick children. We also need your help ...

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