December 23, 2025 |
Nurses play a vital and multifaceted role in rare disease care, providing consistent patient support, education, and care coordination, and ongoing education is essential to empower them to meet the evolving needs.
What role do nurses play in rare disease care?
According to Jasmine Goh, a Genetics Specialty Nurse at the KK Women’s and Children’s Hospital in Singapore, “Nurses are often the first and most consistent point of contact for individuals and families affected by rare diseases.” Indeed, nurses are the world’s largest workforce and play an intricate and crucial role in screening, supporting, educating, and coordinating care for rare disease patients. Sue Baker, co-founder of the Global Nursing Network for Rare Diseases (GNNRD) notes that “nurses make up 50% of the healthcare workforce and they are often the only accessible healthcare provider for patients, permeating all aspects and settings of care. If nurses aren’t aware of the additional challenges in rare disease they can’t provide the best care for their patients.”
Considering that approximately 5% of the global population has a rare disease, nurses should be seeing these patients on a weekly basis. However, in a Medscape survey of 50 nurses, 80% said that they never or rarely (1 or 2 times a year) see patients who have rare diseases (https://www.gimopen.org/article/S2949-7744(23)00817-8/fulltext). This highlights the need for nurse education. “Rare diseases are collectively common regardless of where you end up in your nursing career – you’ll see them. Nurses need to know how to look after these patients holistically and carefully and to ensure their psychological welfare is protected,” says Zoe Morrison, Clinical Nurse Specialist in Wales and UK Nurse Leader for the GNNRD.
As we learn more about rare diseases and as new therapies are developed, nurses need to keep up to date. Alicia Truelove, a nurse and rare disease advocate in California, United States says, “Education enhances the nurse’s ability to navigate today’s changing healthcare system. With the spotlight on rare disorders, it’s critical to equip nurses with the resources to continue advocating for their patients.”
In 2025, Medscape teamed up with the Global Nursing Network for Rare Diseases (GNNRD; https://www.gnnrd.org/about) to develop Nursing Practice in Rare Disease, a series of 3 educational activities just for nurses.
“Equipping nurses with knowledge in genetics and rare disease care empowers them to provide accurate information, coordinate complex care, and offer the psychosocial support that families desperately need. It’s not just about clinical skills, it is about building confidence, cultural sensitivity, and advocacy. By strengthening nurses’ genomic literacy, we can close the gap between rapid scientific advances and everyday patient care,” said Jasmine Goh.
For more information, please contact Christy Rohani Montez PHD –
srohani@medscape.net
About Medscape Education
Medscape Education (medscape.org) is the leading destination for continuous professional development, consisting of more than 30 specialty-focused destinations offering thousands of free CME and CE courses for physicians, nurses, and other healthcare professional
This content was provided by Medscape Education
Company Details
Latest Content from Medscape Education
Medscape Cardiology | theheart.org is proud to be at the forefront of the Heart Failure Society of America (HFSA) Annual Scientific Meeting (ASM), September 26–29, 2025, in Minneapolis, MN! With...
In today’s digital age, misinformation spreads faster than ever, often driven by sensational headlines and influencer content. These sources of misinformation often overshadow evidence-based content, creating confusion for both healthcare...
The Medscape Global team is bringing their leading cardiology education and proven impact to the European Society of Cardiology (ESC) Congress in Madrid for 2025. Powered by enhanced technologies, methodologies,...
Medical and scientific innovation are in a fast lane closely pursued by digital advances but their dynamism can mute a vital element of progressive healthcare – patient integration.
We are thrilled to announce that Medscape Education has been honored with the SILVER Award in the Patient Education Information division category by the 2025 National Health Information Awards! This...
We are deeply saddened by the recent passing of Dr. Robert Sidbury. Dr. Sidbury was a visionary in pediatric dermatology whose dedication to advancing patient care inspired clinicians, researchers, and...
Medscape Education is a proud sponsor of the inaugural 2025 Cholestatic Liver Disease Summit, taking place June 26–28 in Aurora, Colorado, at the Hyatt Regency Aurora-Denver Conference Center. Hosted in...
June is Brain and Alzheimer’s Awareness Month — a chance to examine real-world data that links new treatments to changing clinical behavior.
Victoria Harvey-Jones, PhD, Clinical Strategist (Oncology) and Worldwide Patient Integration Lead to Present at the 2025 Patient Centricity & Engagement Conference
Medscape Education is proud to present 11 publications at the American Diabetes Association 85th Scientific Sessions, taking place June 20–23 in Chicago. These presentations reflect our commitment to advancing diabetes care...
