Description
Panel discussions and clinical presentations for patients and healthcare professionals.
The aim is to lead information sessions and fruitful discussions between specialists and patients on key topics related to timely diagnosis, specialised multidisciplinary care and transition from childhood to adult care. These sessions will be used to gather expert information and tease out proposals for progress.
Panel discussions:
1. European Joint Action on the Integration of ERNs in the National Healthcare Systems
2. Multidisciplinary care for rare diseases – Key opinion leaders’ presentations and proposals for improvement
3. National Neonatal Screening Programme – Key opinion leaders’ presentations and expansion plans
Clinical presentations
1. Granulomatosis with polyangiitis (Wegener’s disease)
2. Prader-Willi syndrome
3. Developments in Genetics and local reality.
Programme at https://raredisorderscyprus.com/rdd2023/
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