Developing a global nursing network for rare diseases to enhance patient care and support
Intended for healthcare professionals
Evidence and practice    

Developing a global nursing network for rare diseases to enhance patient care and support

Zoe Morrison Syndrome without a name (SWAN) clinical nurse specialist, Noah’s Ark Children’s Hospital for Wales, Cardiff and Vale University Health Board, Cardiff, Wales
Kaila Stevens Programme manager, Rare Care Centre, Perth Children’s Hospital, Child and Adolescent Health Service, Nedlands, Western Australia

Why you should read this article:
  • To enhance your awareness and understanding of rare and undiagnosed diseases

  • To recognise some of the challenges experienced by people with rare and undiagnosed diseases and their families

  • To read about the development of a global nursing network for rare diseases

Rare diseases, while individually rare, are common when considered collectively, affecting about one in 17 people across their lifetime. However, there is a lack of awareness of and education about rare diseases in nursing. To address this, the Global Nursing Network Rare Diseases (GNNRD) has been launched to connect nurses from within all fields of practice and at all levels of experience, with the aim of improving the lives of people with rare and undiagnosed diseases (RUDs). The GNNRD aims to empower nurses on a global scale through leadership, knowledge exchange and skill development and to provide a platform from which they can influence policy and advocate for patients and their families at regional, national and international levels. This article provides an overview of RUDs and some of the challenges experienced by patients and their families and describes the development and aims of the GNNRD.

Nursing Children and Young People. doi: 10.7748/ncyp.2024.e1531

Correspondence

Zoe.morrison@wales.nhs.uk

Conflict of interest

None declared

Morrison Z, Stevens K (2024) Developing a global nursing network for rare diseases to enhance patient care and support. Nursing Children and Young People. doi: 10.7748/ncyp. 2024.e1531

Peer review

This article has been subject to open peer review and checked for plagiarism using automated software

Acknowledgements

The authors would like to thank Sue Baker from the Rare Care Centre, Perth Children’s Hospital, Australia

Published online: 09 September 2024

Want to read more?

RCNi-Plus
Already have access? Log in

or

3-month trial offer for £5.25/month

Subscribe today and save 50% on your first three months
RCNi Plus users have full access to the following benefits:
  • Unlimited access to all 10 RCNi Journals
  • RCNi Learning featuring over 175 modules to easily earn CPD time
  • NMC-compliant RCNi Revalidation Portfolio to stay on track with your progress
  • Personalised newsletters tailored to your interests
  • A customisable dashboard with over 200 topics
Subscribe

Alternatively, you can purchase access to this article for the next seven days. Buy now


Are you a student? Our student subscription has content especially for you.
Find out more