Uxue’s family advocates for change
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More on Argonaute Syndromes Conference 2022
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.
We founded the AGO Alliance to:
find and fund paths to treatment,
promote awareness and share information.
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.