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

Please find the tentative program below

• Program of the preceding science "The Argonautes" conference

• Virtual sessions are only on Saturday 11.00 - 17.00

• All times are Central European Time

Friday 23 August 2024 - Meet & greet, poster session

• 12.00 - 13.00: Meet and greet for families

• 13.00 - 16.00: Poster session jointly with scientists

  • We would like to present posters on our children at the conference to share the patient voice with as many researchers as possible. Share your story via this form. We will create the posters for you.

• 16.00 - 19.00: Living library, optionally short videos

• 19.00 - 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 - 10.30: Argonautes and human disease - SCIENCE CONFERENCE PRESENTATIONS - OPTIONAL FOR FAMILIES

  • Prof. Lessel, Prof. Piton, Prof. Kreienkamp

• 10.30 - 11.00: Coffee break and start of day for families

• 11.00 - 12.00: Session 1 - The patient story

  • Welcome

  • Panel with patient families

• 12.00 - 13.00: Lunch break

• 13.00 - 14.30: 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

• 14.30- 15.00: Session 3 - DOs and DON’T’s during diagnosis

  • Workshop with families and researchers

• 15:00-15:30: Coffee break

• 15.30 - 16.30: Session 4 - Parents to parents session

  • Inspiring stories

  • Overcoming difficulties

  • Open questions

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

Sunday 25 August 2024

• 09.00-13.00 - Social activity for families, goodbye lunch

The workshop will take place at the Copenhagen Biocenter in Denmark.

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

Copenhagen has an international airport.

We have prebooked a central hotel and reserved a variety of rooms 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 we plan to take a bus or taxi to the venue. Getting around Copenhagen is fairly easy.

If you want to book a room, email Iben by July 20 at the very latest.

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

• The easiest way to see how to get around is to use google maps

• If you are traveling a lot in one day you can buy a one day travel pass

• If you have data on your phone we recommend downloading the DOT app

• 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). The price depends on what type of ticket you buy

• 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

• You can apply via the registration form

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

• Virtual attendance: Sessions on Saturday (11.00-17.00 CET) will be live-streamed as well as recorded. Even if your family is not able to join the conference physically, we would love to have you join us via a poster! Share your story here.

• Food:

  • Meals on Friday (lunch, coffee break, dinner) and Saturday (lunch, coffee breaks) will be provided for free 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.