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More on Argonaute Syndromes Conference 2022

What are Argonaute syndromes?

Argonaute syndromes are rare, neurodevelopmental, genetic disorders. Affected individuals may suffer from delayed motor development, seizures, problems speaking and understanding, and cognitive impairment. 

The syndromes are associated with mutations in the genes AGO1 (AGO1-related syndrome) and AGO2 (Lessel-Kreienkamp/Leskres syndrome). They may produce a similar, if not the same, syndrome.

We know little about these recently discovered, rare diseases, which brings no comfort to families. It is devastating to be told that the prognosis is unclear, that there is no treatment, and that there is not much that can be done for your child.

Our mission

We founded the AGO Alliance to:

We believe in the potential of research and innovation to one day improve the life of not only our children but all children affected by Argonaute syndromes.

I’m impressed by how far we have come since the first paper on AGO2/Leskres came out. We've learned quite a bit about the syndrome, you are organized as a patient group, and we had a conference. You are moving very fast. I have not seen this before in other rare diseases.

Prof. Meister

Argonaute researcher

To define ultra-rare genetic disorders we need a close interdisciplinary collaboration between patient families, clinicians, and diagnostic and research laboratories.

Prof. Lessel

Discoverer of AGO2/Leskres Syndrome