About us

Our story

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.

Our vision

A world where every person with Argonaute syndrome can thrive

Our mission

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.

  1. 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.

  2. 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.

  3. 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.



Nora, PhD

Co-Founder & President

Mother of an affected child. PhD in Biomedical Engineering from EPFL, visiting researcher at Stanford University, now R&D Manager at Swiss Reinsurance Company. Based in Switzerland.

Christoph, PhD

Co-Founder & Vice-President

Father of an affected child. Professor of Finance

Silvio, PhD


Grandfather of an affected child. Makes sure our books are accurate

Aldona, PhD

Science Officer

Mother of a son with AGO1. PhD in Cell Biology. Manager in clinical trials at AstraZeneca. Based in Poland


Community Leader, Germany

Mother of patient #1 and initiator of our Facebook parent support group. InnovationX Venture Builder at Airbus.


Community Leader, USA

Mother of a daughter with AGO1. BSc in Health Science. Administrative Associate at Stanford University.


Community Leader, Spain

Mother of Uxue, a girl affected by AGO1, and founder of partner organisation Sindromes AGO



Freelance copywriter, editor and social media specialist from Poland


Design & Website

Uncle of an affected child. Responsible for design and website development. Currently freelancing Web & Multimedia Specialist at vanilla.ch.


Web Support, Ukraine

Freelance web support and media designer from Ukraine.


Please reach out if you wish to support us with any of the below:

  • Communications: Establish an active public presence on social media (Facebook page, Instagram). Craft newsletters for our community

  • Patient registry champion: Support or drive the creation of our own patient registry

  • Community leader: Be the contact for patient families in your country. Ideally, establish a local non-profit organization with tax-exempt status

Scientific advisory board

Prof. Davor Lessel

Professor, Institute of Human Genetics, University Hospital Salzburg

First to document Lessel-Kreienkamp syndrome (AGO2 gene) in Lessel et al. 2020

Prof. Hans-Jürgen Kreienkamp

Professor, Institute of Human Genetics, University Medical Center Hamburg-Eppendorf

First to document Lessel-Kreienkamp syndrome (AGO2 gene) in Lessel et al. 2020. Bio

Prof. Gunter Meister

Professor, Department of Biochemistry I, University of Regensburg

Leading researcher on RNA-guided gene silencing and AGO2. Bio

Prof. Amélie Piton

Professor, University Hospital Strasbourg

Led an international study that described the AGO1-related syndrome (Schalk et al. 2021)



We are a member of EURORDIS, the European alliance of ~1000 rare disease patient groups


We are a member of ProRaris, the Swiss alliance of rare disease patient groups

ERN Ithaca

We are a part of the European Patient Advocacy Group (ePAG) of the European Reference Network Ithaca for Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders

Global Genes

A coalition of more than 750 rare disease organization to drive better outcomes for the rare disease community. globalgenes.org


A UK charity that brings rare disease groups together. We are part of the 21/22 mentoring cohort. www.rarebeacon.org

Transnational Giving Europe

An initiative for tax-effective cross-border donations in Europe

Rare Village Foundation

Our fiscal sponsor in the US