Roundtable launch of the Global Nursing Network for Rare and Undiagnosed Diseases
A new network has been established to connect nurses caring for people living with rare and undiagnosed diseases around the world. The Global Nursing Network for Rare and Undiagnosed Diseases was conceived to facilitate the exchange of skills and knowledge between nurses, to solve problems and generate new ideas for the rare disease community. As all nurses will care for rare disease patients in some way at some point in their career, a network such as this, which allows for expertise sharing across specialties and levels of experience, is an important tool in improving the lives of people living with rare diseases. As it grows, the network will also allow nurses to work together on projects, share resources, and access opportunities. This is particularly valuable for participants from low and middle income countries, who represent approximately half of the countries involved to date.
From 9-10 March 2023 in Singapore, a roundtable event was organised by the Rare Care Centre at Perth Children’s Hospital, Western Australia, Curtin University Singapore, and the Duke-National University of Singapore partnership to co-organise and launch the Network. The event was attended by global leaders in rare diseases, as well as 33 nurses from 25 different countries. Recordings of the three plenary sessions are available on YouTube (1 2 3). In the weeks since the roundtable, a total of 72 nurses from 22 countries have already formally joined the Network, with more sure to follow.
For more information about the Network, its goals and the roundtable event, or to find out how to join, visit their website and watch the introductory video.
