Resources for families


Get support and contribute to the cause


If you feel broken or isolated after diagnosis, know that you are not alone.

If your doctor can't tell you how other kids are, ask other parents.

Connect with others in our private family support group on Facebook. Our group is open to all families affected by a mutation in an Argonaute gene (AGO1, AGO2, AGO3, AGO4). Or get in touch with us.

Fill in our form to share your location with other families so you can meet up and we have an accurate count.

Sign up for our newsletter to receive important association & research updates, and get invited to community events and webinars.


You are part of the pathway to a cure.

Better understanding of disease is critical to developing drugs and designing trials.

Participate in Prof. Lessel's Natural History Study to help understand the disease and advance research.

Get involved

If you wish to support us, here are things you can do:

  • Talk about us to your surroundings

  • Follow our LinkedIn page and share posts

  • Send us a portrait of your child we can use anonymously

  • Facilitate an online family meetup

  • Share your story to become a lifeline for other families and tell the world why we need to find a cure (we can help you write it),

  • Join our team or recruit among your family & friends,

  • Donate to fund critical research,

  • Raise funds in your community to support our cause: E.g. for your birthday, or organize a small event.

Our letter to newly diagnosed families

Dear newly diagnosed parent, 

The day our kids were diagnosed with an Argonaute syndrome was devastating, crushing, hopeless. We couldn’t see a future as a happy family and felt broken.

"Keep going. That’s all you have to do, ever. ... Just keep going, please. Slowly is fine. Crawling is fine. No feeling is final. Except hope." Glennon Doyle

We had to allow ourselves to grief the loss of the life we had imagined. If you wish to learn more about the stages of grief, this is a good overview. Emily Perl Kingsley wrote a poem about raising a son with Down syndrome, that may help you after diagnosis.

We know affected children can develop very differently. While Emma is currently seizure free, walked at 16 months and understands her parents, Finn hardly learnt to walk and will never be able to speak. 

We don't know what the future will hold, but we will do our utmost to help all our children live their lives to the fullest.

Love, Nora, Christoph and Antje

Have hope, especially in this day and age of incredible breakthroughs in biomedical technology.

Andrew Lo, Prof. of Finance at MIT and rare disease advocate

Coping 101: Focus on what is possible

From an early age, my parents taught me to focus on the things that are possible, instead of being sad about the ones that are not. This works best for me when I live in the here and now and accept the moment as it is.

Dr. Tanja Frey

Physician at the Institute of Medical Genetics at the University of Zurich and rare disease patient

Resource guides




We would like to thank the following individuals and organizations.