2024 - Malmø, Sweden

Date and location

Radisson Blu Hotel
Östergatan 10
211 25 Malmø
Sweden

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

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