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

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.

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Publication Details

Journal
Nursing Children and Young People
Published
2024-09-09
DOI
https://doi.org/10.7748/ncyp.2024.e1531
Primary Topic
Genomics and Rare Diseases
Type
article
Field-Weighted Citation Impact
0.00
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article

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

Zoë Morrison, Kaila Stevens
Nursing Children and Young People
Genomics and Rare Diseases
article

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

Zoë Morrison, Kaila Stevens
article en

Abstract

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 PeopleVol. 37(3)
Princess Margaret Hospital for Children (AU), Noah's Ark Children's Hospital for Wales (GB)
Openalex Percentile: Top 83%
Genomics and Rare Diseases
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