In late 2020 Nora and Christoph's 7-month old daughter was diagnosed with a rare gene mutation in AGO2. 21 cases were known worldwide at the time, among them Antje's son Finn who was the first to be diagnosed.
Little was known about this novel disease, the prognosis given was devastating and we were told that there was nothing that could be done. So together we set out to connect families and do the impossible to enable our children to develop like other children. AGO2 Association was born.
AGO2 Association is a non-profit organization dedicated to improving the life of children and families impacted by AGO2 (Lessel-Kreienkamp/Leskres) syndrome by
Finding and funding paths to treatment. Because many rare diseases affect so few patients, pharmaceutical companies neglect to fund early translational research, and today it sadly is up to parents to advance science & medicine.
Connecting families. Because AGO2 syndrome is both rare and new, patients are isolated and little is known about caring for our children. Uniting families and identifying more patients is vital.
Raising awareness. Because AGO2 syndrome is poorly known, we need to spread awareness and make high-quality, reviewed information available.
We are registered as a tax-exempt association in Switzerland (J0002264973, CH-020-6002909-9) and are a partner of Transnational Giving Europe and the Rare Village Foundation. Our articles (original signed in German). Our annual report 2021.