Invitation
Nordic NCL
Conference
Radisson Blu Hotel
Malmö
21-23 November 2023
Conference details
This Conference is aimed for...
Professionals working within the NCL field, i.e.
- Doctors (Neurologists, Psychiatrists, Pediatricians, …)
- Researchers
- Nurses
- Phychologists
- Therapists (Physiotherapist, Occupational therapist, …)
- Special Educators (Pedagogues)
- Special Consultants, and
- others with a professional interest within the NCL field
Parents of NCL children
We hope to gather
a crowd, with 50% Professionals and 50% Parents.
Main Sponsor:
Tuesday
21 November
16.00 (from)
Arrive at hotel
19.30 (from)
Networking drinks in the lobby
Wednesday
22 November
09.45
Conference starts
17.00
Conference closes for the day
18.30
Dinner
Thursday
23 November
08.45
Conference starts
15.00
Conference ends
Wednesday
22 November
09.45 Coffee and networking
10.00 Conference starts / Opening remarks
(NCL Denmark, Mette Behnke)
10.10 Introduction of participants
10.20 Running and upcoming CLN studies
- Denmark (Mette Handrup)
10.50 Mini-break
11.00 Running and upcoming CLN studies
- Norway (Ingrid Helland)
11.30 Communication; how to understand and be understood
– in relation to NCL (Frambu)
12.15 Lunch (and potential check-in)
13.30 Running and upcoming CLN studies
- Sweden (Niklas Darin)
14:10 A parents’ experience
- with openness about the diagnose (Kjersti Stensland)
14.30 Coffee Break
14.50 Presentation of current research and (upcoming) trial
(BBDF / Theranexus)
16.00 Stress – how to manage it
(Perspectives from a former Captain in the Danish Army)
17.00 End of Conference, day 1
18:30 Dinner and networking
Sign up asap, no later than mid-October
Thursday
23 November
08.45 Coffee & introduction to the day
09.00 Running and upcoming CLN studies
– Norway, part 2 (Magnar Bjørås)
09.40 Presentation of approaches to NCL children
- Organising a support team for NCL children & families (Una Stenberg & Ellen Annexstad, Frambu)
10.30 3 work streams, divided in professions, with the focus on how to improve cooperation on a Nordic level.
- Discussion of potential medical related studies in theNordics, and how to move forward
Participants: Professionals from the medical world (Moderator: Magnar Bjørås) - Discussion of approaches to NCL children in phase 1, 2 and 3, and how to move forward
Participants: Professionals from the therapeutic, pedagogical, psychological, etc. world (Moderator: To be confirmed) - Discussion/overview of ongoing therapies in Europe By UKE (University Hospital Hamburg Eppendorpf) Participants: Parents
(Moderator: to be confirmed)
13.00 Lunch
13.00 Presentation of output from Workstreams, and what comes next (Moderator: Mette Behnke)
13.45 Evaluation of Conference – and potential topics for next year
14.30 Coffee & Goodbye
15.00 Conference ends
Paticipation fee
*All invoices will be made in Danish Kroner!
Professionals
DKK 4.000 - Participation, full Conference
DKK 3.200 - Participation, only one hotel night
DKK 2.300 - Participation, no hotel room
The full participation fee covers
- 2 days Conference
- 2 nights accommodation, and
- Includes food & (non-alcoholic) beverages
Parents
DKK 2.800 - Participation, full Conference
DKK 2.000 - Participation, only one hotel night
DKK 1.100 - Participation, no hotel room
DKK 1.500 - Participation, spouse in existing room