Our history
The European Chromosome 11 Network was founded in 1997 by Annet van Betuw and her husband Rob Jongman. Our first gathering took place in March 1998 in Ede, The Netherlands, where 17 families from across Europe—Holland, Germany, Italy, the UK, Belgium, Norway, and Denmark—came together for the first time.
For many, it was the first opportunity to meet other families and children affected by 11pq disorders. This marked the beginning of a long and inspiring journey, leading to the connected and supportive community we are today.
Annet led our network with passion and dedication during its first decade, raising awareness about chromosome 11 disorders within healthcare systems and organizations across Europe and the USA.
Since 2000, our network has hosted numerous conferences, allowing families to connect in person. Recent conferences have taken place in 2022 and 2024, with many more to come. 😊