Pharmafile Logo

Medscape and the GNNRD: Empowering Nurses With a Rare Disease Education Series

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.

  • The first, Introduction to Genetic Counseling is aimed at enabling nurses to better support patients and their families navigate genetic testing, counselling, and interpretation in the context of rare disease
  • The second, Mental Health Support and Well-Being,  focuses on nurse support for the mental health and well-being of patients and families affected by a rare or undiagnosed disease
  • Finally, Care Coordination is an activity aimed at enabling nurses to better to support their patients and families affected by a rare or undiagnosed disease, by understanding the importance of care coordination, its role in supporting people living with a rare disease, and by making practical changes to more effectively coordinate care across the wider care team.

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 Wins Anthem Award for Rare Disease Education Platform

Platform has reached 2.4 million healthcare professionals worldwide since 2021. Newark, NJ - [November 18, 2025] - Medscape, the leading digital platform for physicians and healthcare professionals (HCPs), has been...

Shifting the Paradigm: A New Era for Parkinson’s Care

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.

World Orphan Drug Congress 2025 in Amsterdam

Medscape Education will make its debut at the World Orphan Drug Congress (WODC) 2025, taking place in Amsterdam, the Netherlands, October 28-29.

Medscape Education: Pioneering Pathways at ESMO 2025

Medscape Oncology will be pioneering pathways at the 2025 ESMO congress taking place in Berlin, Germany this October.

Game On: Medscape Education Golfs for a Cause

Medscape Education is proud to stand alongside the National Kidney Foundation (NKF) as a sponsor of one of the nation’s most impactful charity events benefiting patients living with kidney disease,...

Innovation in Action at AAFP FMX 2025

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,...

Shifting the Paradigm: A New Era for Parkinson’s Care

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.

Global Healthy Living Foundation and Medscape Education Join Forces to Bridge the Gap Between Patients and Providers with Immunology Education

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...

Breakthrough Alzheimer’s Therapies Drive Early Detection Rates While Exposing Deep Treatment Disparities

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...

Virtual Practice, Real Results: The Power of Virtual Patient Simulation

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...