Wednesday 13. November

• From 16.00 – Check in
• From 20.00 – Networking

Before lunch

• • 09.00 – Welcome incl. introduction // Mette Behnke, NCL Denmark
  • 09.20 – A reminder; Why we are here // Trine Paus, NO
  • 09.30 – How to ensure Patient, Parent, Public Involvement (PPPI) in NCL Research – experience at the Hamburg NCL specialty clinic // Angela Schultz, Uke Hamburg, DE
  • 10.00 – Support for families of children with CLN3-disease concerning emotion and behaviour: a Delphi-study // Yvonne Kruithof, Bartimeus, NL
  • 10.25 – Coffee Break
  • 10.55 – Moving forward! – From data to knowledge to advice, to preserve walking for as long as possible //Marieke Schut & Linda van Eck, Bartimeus, NL
  • 11.10 – Research update from Norway // Ingrid Helland, Oslo University Hospital, NO
  • 11.20 – Research update from Sweden // Niklas Darin, Queen Silvias Hospital, SE
  • 11.35 – Research update from Denmark // Mette Handrup & John Østergaard, Aarhus University Hospital, DK
  • 12.00 – Lunch

After lunch

• 13.00 – Finding new ways to treat CLN3 disease: Latest update // Herman van der Putten, NCL-Stiftung, DE
• 13.30 – Project Butterfly: A Personalized Antisense Oligonucleotide Medicine for an Ultra-rare Form of CLN3 Batten disease // Michelle Hastings, University of Michigan, US & Yael Shiloh-Malawsky, University of North Carolina, US
• 14.00 – The caretaker angle: Recruitment, skills, focus and support // Rikke Krause, Duos,
• 14.25- Group Picture followed by Coffee break
• 15.00 – Childhood dementia in education // Bengt Elmerskog & Anne-Grete Tøssebro, NO
• 15.15 – Cognitive and adaptive outcomes in CLN3 Batten disease // Heather Adams, University of Rochester Medical Ctr., US
• 15.50 – Memorial bank: Professional usage to assist quality of life // Anette Løvsteen & Line Rosenkviss, Caretakers, DK
• 16.05 – Mini break
• 16.15 – Latest update on NCL laboratory research // Jon Cooper, Washington University, St Louis, US
• 17.00 – Wrap up of the day
• 19.00 – Dinner

Before lunch

• • 08.20 – Introduction to the day
  • 08.30 – Clinical Trial Update // Ineka Whiteman, BDSRA, AUS (Virtual)
  • 09.00 – Kick-start of work-shops 1 & 2 // Mette Behnke, NCL Denmark, DK
  • 09.05 – Intro Workshop 1: “Psychoeducation and how to talk with children with CLN3” // Yvonne Kruithof, Bartimeus, NL
  • 09.40 – Intro Workshop 2: Biomarkers & NCL’s // Tom Wishart, University of Edinburgh, GB
  • 09.50 – Coffe Break (incl. check-out)
  • 10.20 – Break-out in Workshops

Workshop 1:
Meeting children with NCL3: Challenges and approaches

•  //

Moderator: Kristine Stadskleiv, OUH, NO & Yvonne Kruithof, NL

Workshop 2:
What are the roadblocks for developing a therapi?

•  //

Moderators: J. Cooper, M. Nickel & I. Whiteman

• • 11.30 – Feedback from workshops
  • 12.00 – Lunch

After lunch

• 12.50 – Anticipatory grief // Marlene Ramsberg, Løvemamaerne, NO
• 13.05 – Openness about the disease – Syver’s journey // Øyvind Blindheim, NO
• 13.25 – Childhood dementia in Denmark; A status // John Østergaardm AUH, DK
• 14.10 – Evaluation
• 14.30 – Coffee Break and wrap up
• 15.00 – End of Conference