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Familie conferentie
1 | 02/08/2019 | Speakers and Supporters | ||
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Welcome and Opening | 09:30 | 10:00 | ||
CdLS Introduction (Continued) | 10:00 | 10:45 | ||
Morning break | 10:45 | 11:15 | ||
CdLS Introduction | 11:15 | 12:00 | ||
Lunch | 12:00 | 13:30 | ||
Pain and CdLS | 13:30 | 14:15 | ||
Behaviour, what do we see? | 14:15 | 15:00 | ||
Afternoon break | 15:00 | 15:30 | ||
Communication | 15:30 | 16:15 | ||
Relationships and Self-Care | 16:15 | 17:00 | ||
Create new block starting at 17:00 |
2 | 03/08/2019 | Speakers and Supporters | ||
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Introduction for second day | 09:30 | 09:45 | ||
Reflux | 09:45 | 10:30 | ||
Other problems with digestion of food and intake of water | 10:30 | 11:15 | ||
Morning break | 11:15 | 11:45 | ||
Sensory Processing | 11:45 | 12:30 | ||
Lunch | 12:30 | 14:00 | ||
Growing up, walking, learning and living | 14:00 | 14:45 | ||
Afternoon break | 14:45 | 15:15 | ||
What about US... | 15:15 | 16:00 | ||
Conference Closure | 16:01 | 16:30 | ||
Create new block starting at 16:30 |
Gala dinner
1 | 03/08/2019 | Speakers and Supporters | ||
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Opening gala dinner | 19:00 | 19:10 | ||
Surprise act | 19:10 | 19:15 | ||
Awards celebration 2019 | 19:15 | 19:30 | ||
Dinner buffet | 19:30 | 21:30 | ||
Het Nederland film orkest | 19:45 | 21:00 | ||
Celebrate, relax and dance | 21:30 | 00:00 | ||
Create new block starting at 00:00 |
Wetenschappelijk symposium
1 | 01/08/2019 | Speakers and Supporters | ||
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Welcome | 08:00 | 08:05 | ||
Introduction | 08:05 | 08:30 | ||
Genetics, Mechanisms and Model Systems | 08:30 | 10:15 | ||
coffee break | 10:15 | 10:30 | ||
Clinical and Molecular Correlations | 10:30 | 11:45 | ||
Lunch | 11:45 | 12:45 | ||
With the Body in Mind, a somatic approach to self-injurious behavior | 12:45 | 13:30 | ||
Understanding development and behaviour in Cornelia de Lange Syndrome | 13:30 | 15:00 | ||
Round table discussion | 15:15 | 16:30 | ||
Meet and Greet | 16:30 | 18:00 | ||
Create new block starting at 18:00 |
CdLS World federation council meeting
1 | 31/07/2019 | Speakers and Supporters | ||
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Welcome in Germany | 09:30 | 09:35 | ||
2. Introduction & Federation Report | 09:35 | 10:00 | ||
3. Financial Report | 10:00 | 10:15 | ||
4. Combined Federation and SAC Meeting | 10:15 | 11:15 | ||
Coffee and Tea break | 11:15 | 11:30 | ||
5. Purpose of the Federation | 11:30 | 13:00 | ||
Lunch | 13:00 | 14:00 | ||
6. Recombine Federation and SAC Meetings | 14:00 | 14:30 | ||
5. (Cont.) Purpose of the Federation | 14:30 | 15:30 | ||
7. CdLS World Website | 15:30 | 16:00 | ||
8. Review of Rare Diseases International and Eurordis | 16:00 | 16:30 | ||
9. Overview of Member Group Activities | 16:30 | 17:30 | ||
10. AOB, Close and Thanks | 17:30 | 18:00 | ||
Create new block starting at 18:00 |
1:1 consultations
1 | 02/08/2019 | Speakers and Supporters | ||
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Create new block starting at 09:30 |
2 | 03/08/2019 | Speakers and Supporters | ||
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Create new block starting at 09:30 |
CdLS World federation Scientific Advisory Committee (SAC) meeting
1 | 31/07/2019 | Speakers and Supporters | ||
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Opening | 10:00 | 10:15 | ||
Combined Federation-SAC Board Meeting | 10:15 | 11:15 | ||
SAC Board Meeting | 11:15 | 12:00 | ||
Lunch | 12:00 | 13:00 | ||
SAC meeting | 13:00 | 14:00 | ||
Recombined Federation-SAC Board Meeting | 14:00 | 14:30 | ||
Coffee and Tea break | 14:30 | 15:00 | ||
Fire talks | 15:00 | 17:30 | ||
Create new block starting at 17:30 |
Sibling program
1 | 02/08/2019 | Speakers and Supporters | ||
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Walking to Train station | 09:00 | 09:30 | ||
Enjoy the train ride | 09:30 | 09:50 | ||
Walk through Remagen, to the 'Bridge of Remagen' | 09:50 | 10:15 | ||
Break for some drinks | 10:15 | 10:30 | ||
Peace Museum Bridge at Remagen | 10:30 | 11:30 | ||
Lunch break and walk to boat | 11:30 | 13:00 | ||
Boat trip to Köningswinter | 13:00 | 13:45 | ||
Sealife | 13:45 | 15:30 | ||
Boat trip back to Remagen | 15:30 | 16:20 | ||
Break and walk to Remagen train station | 16:20 | 16:50 | ||
take the Train from Remagen to Bad Neuenahr | 16:50 | 17:00 | ||
Walk from train station to the Hotel | 17:01 | 17:30 | ||
Create new block starting at 17:30 |
2 | 03/08/2019 | Speakers and Supporters | ||
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Walking to Train station | 09:01 | 09:30 | ||
Train to Andernach | 09:30 | 10:10 | ||
Break for some drinks | 10:10 | 11:00 | ||
Geyser Centre | 11:00 | 12:15 | ||
Lunch break | 12:15 | 13:01 | ||
Geyser eruption | 13:01 | 14:35 | ||
Train ride from Andernach via Remagen to Bad-Neuenahr | 15:35 | 16:00 | ||
Walk from train station to the Hotel | 16:00 | 16:30 | ||
Create new block starting at 16:30 |
CdLS Care program
1 | 02/08/2019 | Speakers and Supporters | ||
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Create new block starting at 08:00 |
2 | 03/08/2019 | Speakers and Supporters | ||
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Create new block starting at 08:00 |
Siblings Care (up to 6)
1 | 02/08/2019 | Speakers and Supporters | ||
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Create new block starting at 08:00 |
2 | 03/08/2019 | Speakers and Supporters | ||
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Create new block starting at 08:00 |