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Kleefstra syndrome data collection and the Rare Diseases Observatory00:00
How is the KS community collecting data?00:19
Lessons learned02:37
Rare 2030 recommendations (foresight)04:01
Rare diseases observatory05:06
Rare diseases observatory - methodology06:24
Future plans07:31
16 monitored NDDs at a glance08:30
Monitoring global media news09:45
Monitoring social M10:27
Monitoring scientific publications11:11