We are a non-profit organization with members from all over Europe, managed by a dedicated board. Our core mission is to connect families with others, as well as with healthcare professionals, to better address the challenges they face.
Every two years, we organize a conference where families can come together, connect, and share updates about their children’s development. It is a space for exchanging experiences, celebrating meaningful moments, and speaking openly about the opportunities and complexities of everyday life. Medical professionals, researchers, and a diverse range of speakers from our partner networks — including experts from educational, therapeutic, and social fields — also join us to share their knowledge and respond to questions from families.
Throughout the year, we stay in close contact with our members through several newsletters, sharing updates on medical progress and other relevant information in a clear and accessible way.
We actively support new families by helping them build connections with others whose children have similar chromosome 11 variations, whenever possible. Our aim is to foster a welcoming community in which no one feels alone and everyone can find understanding, encouragement, and support.
Interested in joining our network? Become a member
We have member families across Europe ready to support you. They share their experiences and offer practical advice to guide you every step of the way. You are not alone on this journey, our network is here to help.
The Board
Our History
Reports
