• 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 Conflict of interestNone 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 reviewThis article has been subject to open peer review and checked for plagiarism using automated software
AcknowledgementsThe authors would like to thank Sue Baker from the Rare Care Centre, Perth Children’s Hospital, Australia
Published online: 09 September 2024
or
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
