AGO Alliance

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AGO Alliance AGO Alliance is a non-profit on a mission to improve the life of children with ultra-rare AGO gene disorders (AGO1, AGO2)

Argonaute syndromes encompass AGO1-related syndrome, and Lessel-Kreienkamp/Leskres/AGO2 syndrome

If you have an affected child, please join our private Facebook group: "AGO1 & AGO2/Lessel-Kreienkamp syndrome support group"

We are a Swiss non profit (J0002264973, CH-020-6002909-9) and partner of Transational Giving Europe and Rare Village Foundation to enable tax-deductible donations in the US, UK and Germany

This Global Diversity Awareness Month we celebrate the power of differences and shared purpose. Families, researchers an...
10/10/2026

This Global Diversity Awareness Month we celebrate the power of differences and shared purpose.

Families, researchers and advocates from around the world bring unique experiences and skills to our community, and it’s by combining these strengths that we drive understanding and progress for children with AGO syndromes.

A very important issue getting much-needed attention: what happens when a child becomes an adult and support systems dis...
06/09/2026

A very important issue getting much-needed attention: what happens when a child becomes an adult and support systems disappear?

Colin Farrell spent years protecting his son James’s privacy. But when James turned 21, Farrell began speaking publicly about a challenge many families face: support for people with intellectual disabilities can become much harder to access once they reach adulthood.

James has Angelman syndrome and is nonverbal, and Farrell acknowledged the difficult decision involved in sharing such a personal part of his son’s life. He ultimately chose to speak out because he wanted to advocate not only for James, but for other adults with intellectual disabilities and the families trying to support them.

That advocacy led to the creation of the Colin Farrell Foundation, focused on improving opportunities, resources, and long-term support for adults with intellectual disabilities.

“I want the world to be kind to James,” Farrell said. “I want the world to treat him with kindness and respect.”

It’s a simple hope, but one that points to a much bigger issue. Turning 21 shouldn’t mean suddenly losing the support, opportunities, and protections that helped someone throughout childhood.

Farrell is using his platform to bring attention to that gap—and to help build a future where people like James can continue to be supported, respected, and included throughout their adult lives.

On World Skyscraper Day we celebrate innovation that reaches higher and dreams bigger. Just like engineers and architect...
03/09/2026

On World Skyscraper Day we celebrate innovation that reaches higher and dreams bigger.

Just like engineers and architects who elevate cities floor by floor, researchers and families in the rare disease community are driving discovery and building knowledge step by step to improve lives.

Together we push boundaries and shape a future where AGO syndromes are understood and treatable.

Big news for our AGO2 family! 💙A new study in Genome Medicine expands our understanding of AGO2 across ~70 confirmed cas...
27/08/2026

Big news for our AGO2 family! 💙

A new study in Genome Medicine expands our understanding of AGO2 across ~70 confirmed cases worldwide!

This landmark research offers clearer diagnostic criteria, helps families know what to expect, and paves the way for future therapeutic studies.

A heartfelt thank you to Prof. Lessel and all participating families for making this possible!

📲 Read our full summary: https://argonautes.ngo/en/news/defining-the-ago2-spectrum

As we mark Don’t Be A Bully Month, llet’s choose compassion every day. A simple act of kindness can make someone feel se...
15/08/2026

As we mark Don’t Be A Bully Month, llet’s choose compassion every day.

A simple act of kindness can make someone feel seen, valued and included — and that’s how we build a community where every child and family thrives.

Inclusion is not something to grant, but something society creates.True equity comes with accessible spaces — in healthc...
18/07/2026

Inclusion is not something to grant, but something society creates.

True equity comes with accessible spaces — in healthcare, education and community life — where every child and family belongs.

16/06/2026

On Rare Chromosome Awareness Day and our birthday month, every step we take — every connection, every story shared — matters. Together those drops become the tide that lifts all AGO families.

„Celebrate the milestones that matter to your family. Sometimes the biggest wins are the quietest ones.“You can learn mo...
13/06/2026

„Celebrate the milestones that matter to your family. Sometimes the biggest wins are the quietest ones.“

You can learn more about Wyatt (AGO2) and his mom Kerri in this beautiful article by their local special needs magazine.

We are excited to bring you the story of Wyatt Krickhan! In Cuyahoga Falls, just a short distance from his preschool, a young boy named Wyatt is quietly reshaping the way those around him understand connection, communication, and joy. Currently attending preschool at Wings of Change Therapy Center, Wyatt’s story is one that reflects both the challenges and profound beauty experienced by families within the special needs community! You can view Wyatt's full feature in this month's edition of Uniquely You by following the link below!

https://www.flipsnack.com/BFFF6B77C6F/uniquely-you-magazine-june-2026?p=40

Congratulations Asociación Síndromes AGO on your next grant to Prof. Piton‘s research group 🔬👩🏼‍🏫
11/06/2026

Congratulations Asociación Síndromes AGO on your next grant to Prof. Piton‘s research group 🔬👩🏼‍🏫

Albert, AGO1, is one of the faces of a rare disease campaign in Poland.Great work by AGO Alliance Poland
05/06/2026

Albert, AGO1, is one of the faces of a rare disease campaign in Poland.
Great work by AGO Alliance Poland

Poznajcie Alberta. On ma TO COŚ. Ultra rzadką chorobę: syndrom AGO. Istnieje szansa na leczenie. Rodzice poruszyli świat nauki. Ich działania wspiera noblista, prof. Victor Ambros. Wszystkie prace trwają w trybie non-profit, jednak koszty laboratoriów są gigantyczne. System nie wspiera takich wysiłków, mimo że niosą one nadzieję dla Alberta i innych rzadkich pacjentów. Czas dać im szansę. Podpisz petycję www.tocoś.pl.
AGO Alliance Poland

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Zürich
8008

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