A global nursing network for rare and undiagnosed diseases

Creating a community of practice for all nurses and midwives including students to support children, adults and families living with rare and undiagnosed diseases

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Nurses are vital in providing care, advocacy and support

All nurses at some point in their career will care for someone affected by a rare or undiagnosed disease. The level of knowledge among healthcare providers about rare and undiagnosed diseases is often insufficient and inconsistent.

The Global Nursing Network for Rare Diseases (GNNRD) brings together nurses from across the world, building capacity through connectedness, awareness, education, leadership and advocacy to support people living with rare or undiagnosed diseases.

About

What is the Global Nursing Network?

The GNNRD is a place of communication and sharing of ideas, experience and resources to support comprehensive care and best practice.

Through the exchange of information, expertise and learning this global collaboration of nurses can help to improve the lives of people with rare or undiagnosed diseases.

What is the aim?

The aim of the GNNRD is to empower nurses globally to build capacity, individually and collectively through leadership, advocacy, knowledge exchange and skill development.

The operations of the network are underpinned by the principles of equitable access to care; cultural safety and responsiveness; and partnership with people living with rare or undiagnosed diseases and their families.

Why is a network important?

This network will create a community of practice and provide a voice for nurses to meet the needs of a global community.

Who is it for?

This network welcomes ALL nurses and midwives including students regardless of setting, specialty, level or role, as every nurse will encounter people affected by rare or undiagnosed diseases.

What does it provide?

Through a dedicated professional networking platform, the GNNRD provides a clinical query forum; access to educational resources; and unique opportunities to collaborate on bespoke projects, access funding pathways and scholarships, and be actively involved in research.

This is just the beginning; the GNNRD is working to provide an accredited education course, a mentorship program, host key speaker events and advertise career opportunities.

About 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.

More about rare diseases