- Nurses comprise the largest fraction of healthcare workforce worldwide;
- They are the closest to patientsย and families;
- They perform huge workloads in the ERNs, including highly-specialized procedures, coordination of care, case management, research and registrar nurses, etc…
It is very important to
- meet educational needs of nurses;
- establish best practices for nursing in rare diseases;
- give them opportunities to network and express their voice.
A Global Nursing Network on Rare Diseases has been established in Singapore this Marchย https://gnnrd.org/. There are no prerequisites to join this Network, except being a nurse and having an interest.ย The first step to developing the network was a Roundtable event held in Singapore attended by rare disease global leaders and 30 nurses from 25 countries. More updates will be coming soon. Stay tuned!
