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
This year, Medscape Education is redefining the live learning experience at AAFP FMX 2025. With 8 groundbreaking, accredited symposia, we are proud to be at the heart of the meeting,...
In this episode of “Hear From Her:” Hear from two leaders at the forefront of a much-needed change in how Parkinson’s is understood, diagnosed, and treated.
UPPER NYACK, N.Y.--(BUSINESS WIRE)--The Global Healthy Living Foundation (GHLF) today announced a new partnership with Medscape Education to advance patient-centered innovation within the Immunology Learning Nexus (Nexus), Medscape’s flagship multi-year...
Analysis from Komodo Health and Medscape Education shows cognitive screening up 10% and biomarker testing up 23%, yet significant disparities persist in detection for women and treatment access for Black...
Simulation has never been more vital in medicine than it is today. As increasing numbers of physicians turn to large language models for clinical answers1, the real differentiator isn’t just...
Medscape Oncology is pleased to announce the launch of a groundbreaking new learning space designed to provide education across tumor types and oncology disciplines: PIONEER – PrecIsion Oncology: Navigating EvidEnce...
Over the past few years, as new diseases have emerged or reemerged, a host of new vaccines have become available while many others are in the pipeline. For older adults,...
📍 September 8–10, 2025 Hilton at Penn’s Landing | Philadelphia, PA Medscape Education is proud to return to the 2025 Alliance Industry Summit (AIS) as a Silver Sponsor and leading...
When she’s not taking on challengers on the pickleball court, you can find Heather Lavigne leading Medscape Education’s dynamic insights and impact team as Senior Director. Her leadership philosophy is...
Medscape Education is proud to return to the Power of Women in Medicine Summit™, reaffirming its commitment to uplifting, empowering, and amplifying women across healthcare. As a sponsor, Medscape brings...
