blocks
Familie conferentie
| 1 | 02/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Welkom en Opening | 09:30 | 10:00 | ||
| CdLS Introductie | 10:00 | 10:45 | ||
| Pauze | 10:45 | 11:15 | ||
| CdLS Introductie, deel 2 | 11:15 | 12:00 | ||
| Lunch | 12:00 | 13:30 | ||
| Pijn met CdLS | 13:30 | 14:15 | ||
| Gedrag: wat betekend het gedrag dat we zien | 14:15 | 15:00 | ||
| Afternoon break | 15:00 | 15:30 | ||
| Communicatie | 15:30 | 16:15 | ||
| Vriendschap en waarom bijvoorbeeld hygiene belangrijk is | 16:15 | 17:00 | ||
| Create new block starting at 17:00 | ||||
| 2 | 03/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Introductie van de tweede dag | 09:30 | 09:45 | ||
| Reflux | 09:45 | 10:30 | ||
| Overige problemen met voeding en het drinken (van voldoende) water | 10:30 | 11:15 | ||
| Morning break | 11:15 | 11:45 | ||
| Voelen, proeven, zien, horen en daarop reageren en kunnen ondernemen | 11:45 | 12:30 | ||
| Lunch | 12:30 | 14:00 | ||
| Groter worden, leren en leven | 14:00 | 14:45 | ||
| Afternoon break | 14:45 | 15:15 | ||
| En hoe gaat het met ons... | 15:15 | 16:00 | ||
| Afsluiting van het officiële deel van de Conferentie | 16:01 | 16:30 | ||
| Create new block starting at 16:30 | ||||
Wetenschappelijk symposium
| 1 | 01/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| 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 diner/feest
| 1 | 03/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| 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 | ||||
Persoonlijke 1-op-1 consultaties
| 1 | 02/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Create new block starting at 09:30 | ||||
| 2 | 03/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Create new block starting at 09:30 | ||||
Bijeenkomst van de CdLS World Federation Council
| 1 | 31/07/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| 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 | ||||
Bijeenkomst van de CdLS World Federation Scientific Advisory Committee (SAC)
| 1 | 31/07/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| 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 | ||||
Plezier programma
| 1 | 02/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Wandelen naar station | 09:00 | 09:30 | ||
| Geniet van de trein-reis | 09:30 | 09:50 | ||
| wandeling door Remagen | 09:50 | 10:15 | ||
| Pauze om wat te drinken | 10:15 | 10:30 | ||
| vredesmuseum 'brug van remagen' | 10:30 | 11:30 | ||
| Lunch break and walk to boat | 11:30 | 13:00 | ||
| Boottocht naar Köningswinter | 13:00 | 13:45 | ||
| Sealife | 13:45 | 15:30 | ||
| Boottocht terug naar Remagen | 15:30 | 16:20 | ||
| Break and walk to Remagen train station | 16:20 | 16:50 | ||
| Neem de trein van Remagen naar 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 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Wandelen naar het station | 09:01 | 09:30 | ||
| Trein naar Andernach | 09:30 | 10:10 | ||
| Break for some drinks | 10:10 | 11:00 | ||
| Geiser Centrum | 11:00 | 12:15 | ||
| Lunch break | 12:15 | 13:01 | ||
| Het spuiten van de geiser | 13:01 | 14:35 | ||
| Treinrit van Andernach via Remagen naar Bad-Neuenahr | 15:35 | 16:00 | ||
| Walk from train station to the Hotel | 16:00 | 16:30 | ||
| Create new block starting at 16:30 | ||||
Broers en zussen Zorg (tot 6)
| 1 | 02/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
| 2 | 03/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
Het programma voor mensen met CdLS
| 1 | 02/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
| 2 | 03/08/2019 | Sprekers en Supporters | ||
|---|---|---|---|---|
| Create new block starting at 08:00 | ||||
