What is the Global Nursing Network for Rare 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.

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.

Who is the network for?

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

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.