October 13, 2022

It's a wrap! Argonaute Syndromes Science & Family Conference 2022

Researchers and families from around the world gathered for a weekend full of emotions, learning and sharing

Family and scientists who attended the first Argonautes and the first Argonaute syndrome conferences

Our event took place on August 26-28 2022 as a satellite of the 1st Meeting on Argonaute Proteins, co-organized by Prof. Meister and Prof. Simard in Regensburg, Germany. We are very grateful for this collaboration and look forward to joining forces again in 2024.

This event wouldn't have been possible without the support of the EU's European Joint Programme on Rare Disease (EJPRD), Horizon Therapeutics and Costello Medical.

To learn more about the conference

What our attendees said

This meeting was very moving for me and has motivated me even more to try to understand the consequences of mutations in AGO1/AGO2.

Prof. Piton, France


We are not alone and there are people working to help those affected.


Germany, dad

(Very!!!) educational, so grateful for this

Stephanie, The Netherlands


Encouraging, insightful, emotional.

Dr. Lessel & Prof. Kreienkamp

Germany, scientists

The relationships formed through the AGO2 association among families who truly "understand" to live with AGO provides support beyond measure. This conference has created long-term connection & hope for our shared cause which will positively impact children & entire families.


USA, mom

Very moving experience; met people with amazing courage; it was truly an honour to attend the conference and get to know such personalities.


Switzerland, scientist

We need a high-quality patient registry as well as learnings from other rare diseases. – Many thanks to the European Joint Programme on Rare Diseases and Costello Medical for sponsoring this conference.


Switzerland, grandfather

Conference recordings

Watch on Youtube to auto-translate captions.

Further videos available upon contact (family panel, lessons learnt by Progeria Research Foundation, industry perspective, closing).

  • Increase understanding of the features of AGO1 and AGO2 and what this means for children with these diseases

  • Help scientists understand the real-life challenges that patients face

  • Encourage research ideas and collaborations

  • Unite patient families to share experiences and support each other

  • Share learnings to raise awareness and engage with the AGO community



Dr. Nora Leonardi - President AGO2 Association


Dr. Davor Lessel - Research Group Leader at University Medical Center Hamburg-Eppendorf

First to document Lessel-Kreienkamp syndrome (AGO2 gene)


Prof. Hans-Jürgen Kreienkamp - Professor at University Medical Center Hamburg-Eppendorf

First to document Lessel-Kreienkamp syndrome (AGO2 gene)


Prof. Amélie Piton - Professor at Strasbourg University Hospital

First to document neurodevelopmental disorder associated with AGO1


Prof. Gunter Meister - Professor at University of Regensburg

Leading researcher on RNA-guided gene silencing and Argonaute proteins

Program of the preceding science conference.

Friday August 26 - Meet & Greet

  • 16:00-17:30: Meet and greet for families

    • Dancing for all abilities with Carolina Youth Dance Academy (founded by AGO2 parents)

  • 17:30 BBQ conference dinner. Opportunity to meet and network with attendees of the science conference

Saturday August 27 - Main Conference

  • 10:30-11:00: Coffee

  • 11:00-12:30: Session 1 - The patient story

    • Welcome by Dr. Leonardi, panel with patient families and storytelling with Dr. Schey

  • 12:30-13:45: Lunch break

  • 13:45-15:15: Session 2 - AGO1/AGO2 research: What we know about the syndrome and what this means for your child 

    • Discussion and Q&A with Dr. Lessel, Prof. Piton, Prof. Kreienkamp, Prof. Meister, Prof. Simard

  • 15:15-16:00: Coffee break and dancing for all abilities

  • 16:00-17:00: Session 3 - Paths to a treatment

    • Virtual talks & Q&A with Dr. Leslie Gordon and M. Pettigrew

  • Dinner at Novotel (not included)

Sunday August 28 - Family Day

  • 10:00 - Puppet theater show "The Great Coconut Robbery" with hand-made puppets (special show in English - thanks to fabulous Birgit!!)

  • 11:30 - Lunch in a beer garden

  • ~13:00 - Good-byes after lunch


University of Regensburg, Germany (Google Maps)

Regensburg is a beautiful city in Bavaria. Its medieval historic town is a UNESCO heritage site. We recommend you save some time to visit it!

Regensburg can be reached in 1-1.5h from Munich and in 3.5h from Frankfurt. More information on travel here.

You will receive a pass to travel on local public transport upon arrival at your hotel.


Our conference partner is the Novotel.

  • Food: Room rates include a breakfast buffet. Dinner on Friday, lunch & coffee breaks on Saturday and lunch on Sunday will be provided for free at the conference. Dinner on Saturday night is not included.

  • Language: The official language of the conference is English

  • Child care: We will have a separate space close to the conference room to meet up in. We will have some toys and volunteers in the room to assist with kids activities. Please get in touch if you have extra requirements we should know about ahead of time.

  • Covid: We will respect local requirements regarding covid and are monitoring the situation to keep everyone as safe as possible.

    • Please note that masks must be worn at all times on public transport

    • Please take a self-test before you travel and don't come if you test positive

Please email contact@ago2.org if you have any questions!


Europen Joint Programme on Rare Diseases

This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575

University of Regensburg

Conference host

Costello Medical

Costello Medical supports our conference communication

Horizon Therapeutics

Horizon Therapeutics supports us under their RareIs programme