Nordic NCL
Conference Program
The Nordic NCL Conference is a growing cross-border forum that unites families and professionals to share latest research, advance care, and build a strong support network for children affected by Neuronal Ceroid Lipofuscinosis.
Tuesday 1 December Click to show 3 sessions Click to hide 3 sessions
12:30
Possibility for light lunch & networking afternoon
Sky Bar
From 16:00
Check in
Reception
From 19:00
"Low key" networking reception (pizza/wine/beer)
Sky Bar
Wednesday 2 December Click to show 22 sessions Click to hide 22 sessions
08:45
Welcome incl. introduction of participants
Mette Behnke, NCL Denmark, DK
Conference Room
09:05
A reminder; Why we are here
Carsten Munkholm, NCL Denmark, DK
Conference Room
09:25
Research update from Sweden
Niklas Darin & Colin Reilly, Queens Silvias Hospital, SE
Conference Room
09:55
Research update from Norway & Denmark
Ingrid Helland, Oslo University Hospital, NO & Mette Handrup, Aarhus University Hospital, DK
Conference Room
10:15
Coffee Break
Hall
10:45
Screening of Motor Development in Children: Components, Assessment Domains, and Clinical Insights
Linda van Eck, Bartimeus, NL
Conference Room
11:10
Psychoeducation for families of children with CLN3 disease: Program Development and Insights
Yvonne Kruithof, Bartimeus, NL
Conference Room
11:30
Title to be confirmed
Kathryn Meyer, Neela Therapeutics, US
Conference Room
12:00
Lunch
Restaurant
13:00
Results from Childhood Dementia Global Consensus project
Heather Adams, University of Rochester Medical center, USA
Conference Room
13:20
Supporting communication for children with NCL3
Kristine Stadskiev, Oslo University Hospital, NO
Conference Room
13:40
An Efficacy and Safety Study to investigate Batten-1 for treatment of pediatric subjects with CLN3 Disease – Status and next steps
Marie Sebille, THXPharma, FR
Conference Room
14:00
Group Picture
Conference Room
14:15
Coffee break
Hall
14:40
From NPC to NCLs: Translating Therapeutic Insights
Frances Platt, University of Oxford, UK
Virtual
15:10
Title & speaker to be confirmed
Vincent Blomen, Scenic Biotech, NL
Conference Room
15:30
Mini break with smoothie
Hall
15:40
SOTERIA, An open-label, single-arm, multicenter phase 2 Studyof PLX-200 in Pediatric Patients with Lysosomal Storage Disorders
Minsu Kang, Polaryx Therapeutics, USA
Conference Room
16:05
Haploinsufficiency of lysosomal enzymes and adult-onset neurologicaldisease
Mark Sands, Washington University School of Medicine, St. Louis, USA
Conference Room
16:30
Latest update on NCL laboratory research
Jon Cooper, Washington University School of Medicine, St. Louis, USA
Conference Room
17:00
Wrap up of the day
Conference Room
19:00
Dinner
Restaurant
Thursday 3 December Click to show 17 sessions Click to hide 17 sessions
08:45
Introduction to the day
Mette Behnke, NCL Denmark, DK
Conference Room
08:50
A reminder: Why we are here
Karen Kahn, Founder & mother, Forebatten, USA
Conference Room
09:10
Update on NCL3 projects
Michelle Hastings, University of Michigan, USA & Yael Shiloh-Malawsky, University of North Carolina, USA
Conference Room
09:35
Presentation of Consensus guidelines, NCL 1, 2 and 3
Angela Schulz & Miriam Nickel, Universitätsklinikum Hamburg-Eppendorf (UKE), DE
Conference Room
10:00
Coffee Break
Hall
10:30
Effect of nizubaglustat in CLN3 patient-derived retinal organoids
Gisela Linthorst, Azafaros, NL
Conference Room
11:00
From Pig to Patient: Accelerating Drug Development for CLN3 Batten Disease
Jill Weimer, Sanford Research, Sioux Falls, USA
Conference Room
11:30
NCL3; Experience with a care dog
Emma Hietarinta, Finnish JNCL Association, FI
Conference Room
11:40
Supporting Families with Rare Diseases: Ågrenska’s Experience and Future
Fredrik Löfgren, Ågrenska, SE
Conference Room
12:10
Lunch
Restaurant
13:00
NCL organoids - disease modelling and preclinical testing
Magnar Bjørås & Colleagues, Oslo University hospital, NO
Conference Room
14:00
Fighting for and against Childhood dementia
Øyvind Blindheim, Norwegian NCL Association, NO
Conference Room
14:30
Coffee Break
Hall
14:45
Clinical Trial Update
Ineka Whiteman, BBDF/BDSRA, AUS
Conference Room
15:15
Short summary of the Conference
Jon Cooper, Washington University School of Medicine, St. Louis, USA
Conference Room
15:30
Evaluation & wrap up
Mette Behnke, NCL Danmark, DK
Conference Room
16:00
End of Conference