Apr 17, 2023, 1:55 PM
roundtable singapore 1

New Zealand nurses Sharron Meadows and Rebecca Nicol know the feeling of isolation from being rare – as nurses working as clinical experts in specialised areas of healthcare, they often find it can be a lonely space to work in, with few others in the country specialising in their respective fields to share experiences with and seek advice from.  

So, when the opportunity came up through Rare Disorders NZ to connect and work with other nurses from across the globe to establish a global nursing network on rare and undiagnosed diseases, they did not hesitate to get involved.

Connecting Nurses Globally – A Roundtable in Rare and Undiagnosed Diseases, was held in Singapore on the 9th and 10th March 2023 and hosted by Curtin University Singapore, Singhealth Duke-NUS Genomic Medicine Centre and Rare Care Centre, Perth Children’s Hospital.

A total of 33 nurses came from 25 countries across the globe to the roundtable, to connect and increase collaboration among nurses working with rare diseases globally. They worked together to establish a nursing network that will inform and influence the development of nursing education resources to upskill and raise awareness of rare diseases across the workforce.

The network will act as a platform for nurses to share their experiences and to receive specialised education, with the vision of improving health outcomes for patients with rare diseases. Improving access to diagnostic pathways for patients through earlier identification of red flags and increased screening, is a key aim.

“By participating in this event, I was able to share expertise and experiences with other nurses who work with people with rare diseases.  It enabled me to join a global rare disease network to provide improved care and to support our children and their families who live with rare diseases,” said Sharron Meadows, paediatric neuromuscular nurse specialist.

The network group also enables the development of a nursing support system, to build strategies for handling both specific situations and general stress, which is experienced by nurses when working with children and families who suffer with long term conditions.

“As one of only two nurse specialists in my field in the country, it is not only an incredibly demanding role, but can oftentimes feel like quite a lonely space to be in. I am really excited about the potential of the nursing network, to provide a space where I can receive and give support to others nurses in my position,” said Rebecca Nicol, paediatric metabolic nurse specialist.

Over the next 12 months the next steps for the establishment of the global nursing network will include the development of a network strategy, a business case for sustainability and a network entity with a clear governance structure.

If you are interested in getting involved in the global nursing network on rare and undiagnosed diseases, contact Rare Disorders NZ: enquiries@raredisorders.org.nz.

Sharron and Rebecca will be sharing their insights from the roundtable in a webinar for nurses, hosted by Rare Disorders NZ. Find out more here.


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