Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives

This paper presents a newly developed online learning program currently designed to meet the learning objectives of nurses and midwives and rare and undiagnosed disease. <b>Background/Objectives:</b> This paper will also introduce the Global Nursing Network for Rare Disease and its role...

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Main Authors: Sue Baker, Kaila Stevens, Dale Pugh
Format: Article
Language:English
Published: MDPI AG 2025-04-01
Series:Nursing Reports
Subjects:
Online Access:https://www.mdpi.com/2039-4403/15/5/136
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author Sue Baker
Kaila Stevens
Dale Pugh
author_facet Sue Baker
Kaila Stevens
Dale Pugh
author_sort Sue Baker
collection DOAJ
description This paper presents a newly developed online learning program currently designed to meet the learning objectives of nurses and midwives and rare and undiagnosed disease. <b>Background/Objectives:</b> This paper will also introduce the Global Nursing Network for Rare Disease and its role and commitment in supporting nurses and midwives in the identification of rare disease and the delivery of appropriate care and interventions to care for people living with rare and undiagnosed disease. Globally, nurses and midwives are often the first healthcare provider a patient will engage with. Combined with the estimated 300 million living with a rare disease across the globe, nurses and midwives are well positioned when assessing patients to have adequate awareness and suspicion to consider the presence and impact of rare disease. To enable this awareness and knowledge to ensure timely assessment and referrals, specific knowledge is required. There is a current paucity of learning programs about rare and undiagnosed disease specifically for nurses and midwives. <b>Methods:</b> The proposed learning program comprises seven modules designed to address the learning needs of novice to expert nurses and midwives from across the globe. Increased knowledge will in turn increase awareness and confidence to inform decision-making for patients presenting with undiagnosed signs and symptoms by ‘thinking rare’. <b>Results:</b> The proposed learning program comprises seven modules and a number of individual lessons which will be suitable for the needs of novice to expert nurses and midwives from across the globe.
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spelling doaj-art-858ecbb2b9064a5cbde898d2542268972025-08-20T02:33:55ZengMDPI AGNursing Reports2039-439X2039-44032025-04-0115513610.3390/nursrep15050136Rare and Undiagnosed Disease: A Learning Program for Nurses and MidwivesSue Baker0Kaila Stevens1Dale Pugh2Perth Children’s Hospital Rare Care Centre, Nedlands 6009, AustraliaPerth Children’s Hospital Rare Care Centre, Nedlands 6009, AustraliaPerth Children’s Hospital Rare Care Centre, Nedlands 6009, AustraliaThis paper presents a newly developed online learning program currently designed to meet the learning objectives of nurses and midwives and rare and undiagnosed disease. <b>Background/Objectives:</b> This paper will also introduce the Global Nursing Network for Rare Disease and its role and commitment in supporting nurses and midwives in the identification of rare disease and the delivery of appropriate care and interventions to care for people living with rare and undiagnosed disease. Globally, nurses and midwives are often the first healthcare provider a patient will engage with. Combined with the estimated 300 million living with a rare disease across the globe, nurses and midwives are well positioned when assessing patients to have adequate awareness and suspicion to consider the presence and impact of rare disease. To enable this awareness and knowledge to ensure timely assessment and referrals, specific knowledge is required. There is a current paucity of learning programs about rare and undiagnosed disease specifically for nurses and midwives. <b>Methods:</b> The proposed learning program comprises seven modules designed to address the learning needs of novice to expert nurses and midwives from across the globe. Increased knowledge will in turn increase awareness and confidence to inform decision-making for patients presenting with undiagnosed signs and symptoms by ‘thinking rare’. <b>Results:</b> The proposed learning program comprises seven modules and a number of individual lessons which will be suitable for the needs of novice to expert nurses and midwives from across the globe.https://www.mdpi.com/2039-4403/15/5/136nursingmidwiferyrare diseaseundiagnosed diseaselearning program
spellingShingle Sue Baker
Kaila Stevens
Dale Pugh
Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives
Nursing Reports
nursing
midwifery
rare disease
undiagnosed disease
learning program
title Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives
title_full Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives
title_fullStr Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives
title_full_unstemmed Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives
title_short Rare and Undiagnosed Disease: A Learning Program for Nurses and Midwives
title_sort rare and undiagnosed disease a learning program for nurses and midwives
topic nursing
midwifery
rare disease
undiagnosed disease
learning program
url https://www.mdpi.com/2039-4403/15/5/136
work_keys_str_mv AT suebaker rareandundiagnoseddiseasealearningprogramfornursesandmidwives
AT kailastevens rareandundiagnoseddiseasealearningprogramfornursesandmidwives
AT dalepugh rareandundiagnoseddiseasealearningprogramfornursesandmidwives