What is it about?
The UK and European Union define a disease as rare if it affects fewer than one in 2000 people. Globally, rare diseases affect between 3.5% and 5.9% of the population, with one in 17 people being affected by a rare condition in the UK alone (Nguengang Wakap et al, 2020). This issue of the British Journal of Cardiac Nursing contains two articles focusing on rare diseases, highlighting both the clinician (Global Nursing Network for Rare Diseases) and patient (Aortic Dissection Charitable Trust) perspectives.
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Photo by Ortopediatri Çocuk Ortopedi Akademisi on Unsplash
Why is it important?
The application of clinical reasoning is core to many roles and is no longer reserved just for advanced practice nurses. Complex patients presenting with often undiagnosed, rare, or undifferentiated diseases is now a regular feature in healthcare settings (Rose et al 1999). Primary care services are typically patients’ first point of contact with healthcare services, so it is essential that nurses are aware of rare diseases, especially those that are invisible. As Thompson et al point out, understanding the importance of ‘thinking rare’ and identifying red flags can bring nurses closer to recognising a potential rare disease.
Perspectives
After months of collaboration and enthusiasm, I am ecstatic to bring you the first rare disease edition of the British Journal of Cardiac Nursing in over a decade. I have had the pleasure of working for the UK-based rare disease charity, Beacon for rare diseases, for over four years. In that time, I’ve learnt that rare disease symptoms and their impact on patients are as diverse as the diseases themselves. It’s a privilege to bring the concept of “red flags” to your attention and clinical practice. Thank you for thinking rare with us and enjoy this long-awaited edition brought to you by passionate authors with years of experience in the nursing, cardiovascular and rare disease fields. Thank you for your passion and interest in providing insightful, timely and extraordinary care to all those you serve.
Blayne Baker
Beacon for rare diseases
Read the Original
This page is a summary of: Spotlight on rare diseases, British Journal of Cardiac Nursing, December 2024, Mark Allen Group,
DOI: 10.12968/bjca.2024.0062.
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