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 

Continuing Medical Education Outcomes are Much More Than Statistical Significance

At Medscape Education, we hold ourselves to the highest standards when it comes to analysing our programs. Our approach is unparalleled, employing a precise paired method that ensures we measure the...

The Most Important Person in the Room—A Look at Patient -Centricity at EHA

Across all of healthcare, a greater focus is being placed on patient centricity in order to improve outcomes and enhance patients’ quality of life. Although patient centricity is necessary in...

Innovation in Education Leads to Positive Outcomes at EAN 2023

The Medscape team recently returned from the 9th Annual Congress of the European Academy of Neurology (EAN) in Budapest, Hungary. Among the various highlights of the congress, the team showcased...

The Lasting Impact of Cytomegalovirus Education 

Education on the signs, symptoms, and potential complications of cytomegalovirus (CMV) is in need of constant development, as this common disease affects nearly 1 in 3 children by age 5...

Medscape Education Publishes the Results of Multinational, Multispecialty Survey of Physicians on Rare Disease Educational Needs

Medscape Education has published the results of a global survey of its kind, assessing the educational needs of physicians on rare diseases. This survey of 978 clinicians worldwide across 16...

Medscape Showcases Outcomes in Austria for EASL Congress

Medscape recently attended the EASL Congress in Austria, where they successfully showcased the outcomes of their Wilson Disease education program. One of their achievements was presenting a poster on "Online...

Medscape is Bringing Outcomes to the #HomeOfNeurology

Budapest, Hungary is set to become Medscape's next destination as they gear up for the highly anticipated 9th Annual Congress of the European Academy of Neurology. As an integral part...

Medscape Education: ACOG 2023 Publication

Medscape Education is making a difference! We are wrapping CMV Awareness Month with a look at the impact of CMV education on OB/GYN learners. Take a look as Medscape Senior...

It’s the Era of Outcomes at ERA 2023

The Medscape team has bid farewell to the beautiful city of Milano, Italy and our European nephrology colleagues. The team was thrilled to meet up with so many ground-breaking clinicians,...

International NASH Day 2023

Shari Dermer, PhD of Medscape Education, hosted Michael Betel, Founder and President of Fatty Liver Alliance, in an engaging conversation around the importance of NASH awareness, diagnosis, and prognosis. Listen...