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 meet, share updates about their children’s development, and exchange experiences about the joys and challenges of everyday life. Our partners doctors and researchers also come to share their knowledge and answer questions from families.
We keep our members engaged with several newsletters throughout the year and updates on medical advancements and other relevant information.
We actively support new families, helping them connect with others who have children affected by similar types of chromosome 11 deletions (when possible).
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
