13:00 — 14:30
Arrivals, check-in & hello
14:30 — 14:45
Welcome

Introduction of speakers, translators and caretakers

Gesa Bressel picture
Gesa Bressel
14:45 — 15:00
Break

Drop off for the daycare

15:00 — 16:30
Introduction on Jacobsen Syndrome
Dr. Paul Grossfeld, M.D. picture
Dr. Paul Grossfeld, M.D.
16:30 — 17:45
Establishing and supporting verbal communication with speech-generating devices (SGDs)
Anna Siegmund picture
Anna Siegmund
18:00 — 19:00
Dinner
19:15 — 20:00
Hands on experience speech-generating devices (SGDs)
Anna Siegmund picture
Anna Siegmund
20:00 — 20:15
Documentary on informal caregivers
07:30 — 08:00
Stress release - guided morning walk
O
Olivier Raguin
07:30 — 09:00
Breakfast
09:15 — 10:30
Presentation on behavioral issues
Dipl. Psych. Claus Diegel picture
Dipl. Psych. Claus Diegel
10:30 — 10:45
Break

Snacks and refreshments in the foyer at a casual get-together

10:45 — 12:00
Presentation on behavioral issues
Dipl. Psych. Claus Diegel picture
Dipl. Psych. Claus Diegel
12:00 — 13:00
Lunch
13:15 — 15:00
Planning for the future of my child
Tilman Busse picture
Tilman Busse
15:00 — 15:15
Break

Snacks and refreshments in the foyer at a casual get-together

15:15 — 16:15
Artifical nutrition / supplements
Mario Berg picture
Mario Berg
16:15 — 17:45
Parents discussion groups
18:00 — 19:00
Dinner
19:00 — 20:00
Living loss
Rick Pasman picture
Rick Pasman
20:00 — 22:00
Board games, etc.
07:30 — 08:00
Stress release - morning exercise
T
Teun Verleisdonk
07:30 — 09:00
Breakfast
09:00 — 09:25
Jacobsen syndrome explained by a child
C
Charlotte Albers
09:40 — 10:30
Hematology
Dr. Elise Huisman picture
Dr. Elise Huisman
10:30 — 10:45
Break

Snacks and refreshments in the foyer at a casual get-together

10:45 — 11:30
Hematology
Dr. Elise Huisman picture
Dr. Elise Huisman
11:30 — 11:50
My daily life with ADHD
M
Margot Raguin
11:50 — 12:00
Dr Paul Grossfeld’s video interview by Peter Fekete
P
Peter Fekete
12:00 — 13:00
Lunch
13:15 — 15:00
Immune deficiency in Jacobsen Syndrome
Dr. Ken Paris picture
Dr. Ken Paris
15:00 — 15:15
Break

Snacks and refreshments in the foyer at a casual get-together

15:15 — 16:30
Cardiology Research
Dr. Paul Grossfeld, M.D. picture
Dr. Paul Grossfeld, M.D.
16:30 — 17:45
Group photo and family activity
18:00 — 19:00
Dinner
19:15 — 19:45
Testimony - A week in my life
E
Esmée Heijselaar
20:00 — 22:00
Casual get-together and dance
07:30 — 08:00
Stress release - morning run
B
Bas Albers
07:30 — 09:00
Breakfast
09:15 — 09:30
Conference feedback
09:30 — 10:30
Clinical and neuropsychological characterization of Jacobsen Syndrome
Alexandra Garriz picture
Alexandra Garriz
10:30 — 11:45
Assembly meeting
10:30 — 11:45
Documentary on disability and employment
11:45 — 12:00
Official goodbye