ERN CRANIO Patient Association: AirCRA

As part of our awareness campaign, we are proud to introduce AICRA, a patient association dedicated to supporting individuals and families affected by craniosynostosis. Today, AICRA's President will introduce herself to the ERN CRANIO community and share more about the association's work and mission.

My name is Valeria Cambiaghi, and I represent AICRA, the Italian Craniosynostosis Association. We support children living with craniosynostosis, as well as their families, by providing trusted information, emotional support, and guidance throughout their journey. Our mission is to ensure that no family has to face this diagnosis alone.

To me, being a patient representative means transforming personal experience into hope and support for others. I still remember the uncertainty and fear that came with the diagnosis. That’s why we are committed to being there for families from the very beginning, offering understanding, reliable information, and a community that truly understands what they are going through. Sharing our experiences reminds people that they are not alone and that together we are stronger. 

Rare doesn’t mean alone.  

Reaching out, sharing experiences, and building connections can make an enormous difference. It is also essential to seek care from specialized craniofacial centers as early as possible, because timely diagnosis and expert multidisciplinary treatment can have a lasting impact on a child’s health, development, and quality of life. Together, through awareness and support, we can give families hope from day one.

Find out more about AICRA: Home Aicra - Aicra - Associazione Craniostenosi