About

What is the Global Nursing Network for Rare Diseases?

The GNNRD is a global community of nurses that enables communication and sharing of ideas, experience and resources to support comprehensive care and best practice for rare and undiagnosed diseases.

The objectives of the Global Nursing Network

Connect and increase collaboration amongst nurses working with people affected by rare or undiagnosed diseases globally
Provide nurses with key resources to promote and implement comprehensive care for people living with rare or undiagnosed diseases
Inform and influence the development of nursing education resources to upskill and raise awareness of rare and undiagnosed diseases across the nursing workforce
Strategically influence local, national and global policy and advocacy platforms
Ensure a focus on research, clinical trials and evaluation metrics
Connect and share expertise with other networks to add value

Why are nurses key?

As the world’s largest workforce, nurses are the most accessible healthcare provider, and in some cases the only provider available. Nurses coordinate screening, support rare and undiagnosed disease patients and their families to cope with a diagnosis, deliver therapies and treatments and often evaluate and monitor psychosocial and health outcomes for patients. Nurses also act as health educators, care coordinators, counsellors and share their knowledge with the broader community.

Nurses are uniquely placed to pivot between clinical and non-clinical interfaces so it is essential they have a collective voice.

What are rare diseases?

Rare and undiagnosed diseases are a global health priority recognised by the United Nations Resolution on Rare Diseases and the formation of the Global Network for Rare Diseases in December 2021: a partnership between the World Health Organisation and Rare Disease International.

Even though they are individually rare, collectively rare diseases are very common, affecting more than 300 million people worldwide. There are currently more than 8,000 identified rare diseases. Over 70% of rare diseases start in childhood, and 80% are genetic.

People living with rare or undiagnosed diseases face additional challenges compared to other chronic conditions. Rare diseases often have a long diagnostic journey and patients can see many specialists and receive multiple incorrect diagnoses before their rare disease is identified. Some people never receive a diagnosis.

Rare and undiagnosed diseases are often chronic, progressive, and frequently life-threatening. Patients receive inadequate clinical management, fragmented care and have a lack of treatment options. People living with a rare or undiagnosed disease often experience isolation, stigma, and discrimination.

Who is the network for?

All nurses and midwives including students are invited to join the network.

Why is a network important?

By building the capacity of nurses through leadership, connection and education this Network will provide a voice for nurses to meet the needs of a global community.

As all nurses will care for people with a rare or undiagnosed disease during their career a globally coordinated approach provides the best opportunity to raise awareness and address the individual and collectively common challenges.

The GNNRD will strategically position nurses to influence local, national and global policy and advocacy platforms.

The network in action

Access is provided to a professional networking group where members can interact with each other, seek advice, access educational resources and contribute to the collective expertise of the community. Regular updates on the activities of the GNNRD including details of scholarships, funding, projects and research opportunities are provided here.

Network origins and structure

How did the network start?

In March 2023, the Global Nursing Network was formally launched following the inaugural roundtable ‘Connecting Nurses Globally – A Roundtable in Rare and Undiagnosed Disease’ held in Singapore. The Rare Care Centre, Perth Children’s Hospital, SingHealth Duke NUS Genomic Medicine Centre and Curtin Singapore co-hosted the two-day event which saw 33 nurses representing 25 countries and eight global leaders in rare disease come together to collaborate.

Representing low, middle and high-income countries from North America, Africa, Europe, Asia and Oceania, the attendees developed the foundations of the GNNRD and an education course to upskill nurses in rare and undiagnosed disease.

Nursing Reference Group

From the attendees of the Roundtable a group of nurse leaders has been established as a Reference Group to provide ongoing expert advice to guide the development and implementation of the network and education program. Members represent a wide array of countries and continents ensuring the network strives to support the diversity of all members.

Global Leaders Implementation Group

Twelve global leaders in various rare and undiagnosed disease fields provide strategic direction and oversight of the network. Their individual leadership roles and collective rare disease expertise connects the GNNRD to existing renowned national and global rare disease organisations, strengthening the influence of nursing and creating collaborative opportunities.

Lived Experience Advisory Group

The GNNRD is currently establishing a Lived Experience Advisory Group of people affected by or caring for someone with a rare or undiagnosed disease. The Advisory Group will play a crucial role in guiding the activities of the Network and ensuring the patient voice remains central to the work of the GNNRD. Further information about the group will be updated in the near future.