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 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. AGO Alliance was born.
AGO Alliance is dedicated to improving the lives of children affected by Argonaute Syndromes (AGO1 & AGO2 genes) by accelerating the development of therapeutics, bringing families together, and providing education.
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 Argonaute syndromes are 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 Argonaute syndromes are poorly known, we need to spread awareness and make high-quality, reviewed information available.
We are a non-profit organisation. 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 2022, annual report 2021.