1ST NEA CLUSTER MEETING
MEETING ROOM: THYM + ROMARIN
October, 1 - Plenary Session
09:00 - 09:10
Opening
A. BASTIANELLO
09:10 - 09:30
Patient's story
S. SGRÒ
09:30 - 09:50
EU & International Vision
E. PICCININI
09:50 - 10:00
NEA Cluster
A. BASTIANELLO
Introducing the countries
10:00 - 10:20
France
M. LIEUTAUD
10:20 - 10:40
Nordics
P. SVARVAR
10:40 - 11:10
☕ Coffee break
11:10 - 11:30
Greece
A. TOSOUNI & M. DUCHENE
11:30 - 11:50
UKI
D. GARZON
11:50 - 12:10
Benelux
B. DE GROOT
12:10 - 12:30
Turkey
P. AKIŞ & A. TUTUNCIM
Introduction to afternoon session
12:45 - 13:00
Closure
A. BASTIANELLO
13:00 - 14:30
Lunch
14:30 - 18:00
Workshop
October, 2 - Parallel Sessions
TA AIM
Chairman: P. Svarvar
Elfabrio (09:00 - 11:00)
Felt experience - UKI
Decode Fabry - UKI
Fabry box - Benelux
Go live with "MyFabApp" - Greece
Cookbook co-creation w PAG - Nordics
Board partner & contribution training for PAGs - France
Pedigree booklet - UKI
11:00 - 11:30
Break
Lamzede (11:30 - 12:10)
Alpha-mannosidosis awareness campaign - France
Rare Land shapes key stakeholders dialogue - Greece
Procysbi (12:10 - 13:00)
AD board on transition from paediatric to adult care - Nordics
How LoE shapes market access and revenue strategy - Benelux
TA EM DO
Chairman: D. Garzón
Lojuxta (09:00 - 10:20)
Clinical evaluation of Lomitapide as replacement for apheresis in HoFH patients - Benelux
Compass Programme - UKI
Motivational Interviewing - UKI
PSP Programme - Greece
Myalepta (10:20 - 11:00)
Development and publication of local guidelines in LD - Greece
UK pathway to diagnosis - UKI
Action plan to shorten diagnostic and treatment delays - Benelux
11:00 - 11:30
Break
Raxone (11:30 - 13:00)
Market research project on LHON awareness & knowledge - Benelux
Ad board LHON & PAG - France
Maximizing Raxone potential - Greece
Patient podcast LHON - Benelux
13:00 - 14:00
Lunch
14:00 - 15:00
🎉 Streaming with Ferriprox 25 Celebration
