First international Dup15q meeting in Heidelberg
On June 25, a large delegation from the ENCORE Expertise outpatient clinic Dup15q team attended the first international Dup15q meeting, organized by the Dup15q center in Heidelberg, together with three very passionate mothers, including "our own" Margot Gerrits, manager of an active Facebook group.
It was a truly inspiring meeting, with several centers sharing their experiences. While there was mutual recognition on many fronts, there were also differences. Three of our team members gave presentations about our center. Each of the three mothers also shared a compelling story about their lives with a child diagnosed with this condition.
Afterwards, a spontaneous meeting arose in the hallway, where we established a European network for professionals working with Dup15q. The goal is to improve care for these children and adults through international collaboration in healthcare and research. This can be achieved by sharing experiences in healthcare and developing international guidelines. Sharing useful measurements and research also helps improve care. The numbers per center are small; by collaborating in pooling data, a much more reliable picture of the natural history can be formed, for example.
We've already scheduled our next meeting online and will try to meet in person every other year. We left beautiful Heidelberg with a very good and hopeful feeling.
