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 

The Power of Disease Awareness in Infectious Disease Education at IDWeek 2023

Medscape Education had one of its biggest conferences of the year with IDWeek 2023, hosting six educational symposia and presenting five scientific posters highlighting the outcomes of recent infectious disease...

Hear From Her: Announcing The Women in Healthcare Leadership Series Podcast

On the 8th November 2023, Medscape will launch the first episode of their new podcast: the Women in Healthcare Leadership Podcast Series.This insightful series was designed to elevate and empower...

Medscape Education Invites Listeners to ‘Hear From Her’ With New Women in Healthcare Leadership Podcast Series

Medscape Education has launched their new podcast: the Women in Healthcare Leadership Podcast Series. The series, hosted by Medscape Education employees, features women in leadership roles across industry as well...

Sharing Outcomes in MS at ECTRIMS 2023

During ECTRIMS 2023 congress, the Medscape Education Global team will be on site to present a poster of their educational outcomes.The poster, Virtual Patient Simulation Improves Neurologists’ Performance in Making...

Shining a Light on Current Topics in Oncology

The Medscape Oncology team will be on the road again, this time in Madrid, Spain for ESMO 2023. This year, the team will be sharing education with a deep impact...

Disseminating Outcomes and Impact in Berlin

The Medscape Education Global team is looking forward to a busy time in Berlin at the EADV Congress 2023. During the congress, Medscape will be presenting five posters examining the...

Medscape Education’s Large Presence at IDWeek 2023

Medscape are powering education and disease state awareness in infectious diseases at #IDWeek 2023

Contagious Conversations: Exploring Infectious Disease in the Digital Age

As the world of medicine continues to evolve, it's crucial to stay ahead of the curve. In this dynamic era, digital communications have emerged as a driving force in discussions...

Presenting Outstanding Outcomes from HCP Education in Multiple Myeloma at IMS in Athens

From September 27-30, members of the Medscape Education Global team were in Athens, Greece sharing 5 posters at the International Myeloma Society Annual Meeting, 2023.The posters presented the outcomes and...