blocks
Familie conferentie
| 1 | 02/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | ||||
Wetenschappelijk symposium
| 1 | 01/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | ||||
Gala dinner
| 1 | 03/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | ||||
1:1 consultations
| 1 | 02/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| Create new block starting at 09:30 | ||||
| 2 | 03/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| Create new block starting at 09:30 | ||||
CdLS World federation council meeting
| 1 | 31/07/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | ||||
CdLS World federation Scientific Advisory Committee (SAC) meeting
| 1 | 31/07/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| 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 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
| 2 | 03/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
Siblings Care (up to 6)
| 1 | 02/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
| 2 | 03/08/2019 | Talere og støttemedlemmer | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
