Patient Workshop 2024

• 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

• Aldona, Program

• Iben, local logistics (hotel, social program)

• Nora, fundraising

• Ivan, admin & support

Hosted by Prof. Peter Brodersen from University of Copenhagen

Supported by our scientific advisory board

• Prof. Davor Lessel

• Prof. Amélie Piton

• Prof. Hans-Jürgen Kreienkamp

• Prof. Gunter Meister

• Program booklet

• Program of the preceding science "The Argonautes" conference

• Virtual sessions are only on Saturday 11.45 - 17.30

• All times are Central European Time

Friday 23 August 2024 - Meet & greet, poster session

• 12.30 - 13.00: Registration for families. Main entrance of Copenhagen Biocentre

• 13.00 - 14.30: AGO patient stories. Poster session jointly with scientists

• 14.30-15.40 Families meet & greet

• 15.40-16:10 Coffee break

• 16.10-17.30: Family social time. Preparation for Saturday sessions, living library & optionally short video interviews

• 17.30-18.30: Living library [during social hour of science conference]. Families are available to answer questions about their stories in regard to epilepsy, physiotherapy, neurodevelopment, epilepsy, communication and other topics

• 18.30 - 21.00: Conference dinner and group picture. Opportunity to meet and network with other families and scientists. Offered by Prof. Brodersen

Saturday 24 August 2024 - Family workshop

• 09.00 - 10.10: Argonautes and human disease - SCIENCE CONFERENCE PRESENTATIONS, Part 1 - OPTIONAL FOR FAMILIES

  • Prof. Lessel, Prof. Kreienkamp

• 10.10 - 10.30: Coffee break

• 10.30-11.30: Argonautes and human disease - SCIENCE CONFERENCE PRESENTATIONS - OPTIONAL FOR FAMILIES

  • Prof. Ambros, Prof. Piton

• 11.30-11.45. Technical break and start of day for families

• 11.45 - 12.45: Session 1 - The patient story

  • Welcome

  • Panel with patient families

• 12.45 - 14.00: Lunch break

• 14.00 - 15.30: Session 2 - AGO1/AGO2 research: What we know about the syndrome and what this means for your child 

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

• 15.30- 16.00: Session 3 - DOs and DON’T’s during diagnosis

  • Workshop with families and researchers

• 16:00-16:30: Coffee break

• 16.30 - 17.30: Session 4 - Where to next

  • Organisation update & outlook

  • Inspiring stories, superpowers

  • Closing

• 19.00: Dinner for families & Argonaute Syndrome researchers (not included)

Sunday 25 August 2024

• 09.00-13.00 - Social activity for families

The workshop will take place at the Copenhagen Biocenter in Denmark. Please refer to the conference booklet for a map.

Copenhagen is a beautiful European capital, with highlights including Nyhavn, Tivoli Gardens, and the famous little mermaid statue.

Copenhagen has an international airport.

We will stay at Cabinn Copenhagen. Participants pay for their own lodging.

Rates

• Single: 83€

• Double: 102€

• Triple (bed and bunk beds): 121€

• Family room for 4: 148€

• Breakfast buffet: 17€ per person

• Parking in garage: 28€ /24 hours

From the hotel you can take a bus to the venue. Getting around Copenhagen is easy.

If you have any questions on accomodation or getting around, don’t hesitate to ask Iben.

• You can use Google Maps to see how to get around

• Buying tickets for public transport

  • Ticket information

  • Use the red ‘DSB’ ticket machine at metro stations and airport.

  • Or download the ‘DOT Tickets’ app if you have data on your phone

• From the airport you can take a metro or train to the central station - from there you can either catch a bus or walk to the hotel (1km about 15 minutes on foot). There is only one Metro line at the airport, and the airport is at the end of the line. You won’t be able to miss it.

• To get from the hotel to the conference venue, we suggest you take a train from Dybbølsbro, and change to bus 6a at Nørreport station. This bus has the closest stop to the venue

• Uber does not operate in Denmark so regular taxis are the only option if you do not wish to use the public transportation system.

• Travel scholarships are for families with a child diagnosed with an AGO1 or AGO2 variant

• The scholarship covers EUR 500-1'000. One scholarship will be awarded per qualified family. Funds may be used for travel-related expenses, such as train, airfare, lodging, transportation, etc.

• In order to qualify for the travel scholarship recipients must register for the workshop by July 20, reserve a hotel by July 20, attend the event, submit and present a poster on their child, and fill out a post-event survey

• Scholarships will be paid out a month after the family workshop if the requirements above are met

• Registration cost: Conference attendance is free thanks to the generous hosting by Prof. Brodersen and donors.

• Virtual attendance: Sessions on Saturday (11.45-17.30 CET) will be live-streamed as well as recorded.

• Food:

  • Meals on Friday (coffee break, dinner) and Saturday (lunch, afternoon coffee break) will be provided at the conference

  • Dinner on Saturday night and lunch on Sunday are not included.

• Language: The official language of the conference is English. Recordings will later be posted on our Youtube channel where you can use auto-translation of captions.

• Child care: No child care will be available. We are looking to organise a room close-by where parents could go with their children. Ideally bring along someone who can be with your child while you attend the conference sessions.