Rare Care Centre

Rare Care Centre

Rare diseases are a global health emergency, affecting more than 300 million globally and recognised under the UN Resolution on Addressing the Needs of Persons Living with Rare Diseases and their families.

70% of rare diseases exclusively start in childhood, a global child health crisis- as well as a massive adult health burden. In high income countries, and increasingly with demographic transitions in low and middle income countries, rare diseases are the biggest killer of kids (6 in 10 deaths in children) and the largest hospital cost (2 in 3 dollars spent on paediatric inpatient care). We must better address the unmet need as a human rights and a healthcare sustainability requirement.

Rare diseases are also an innovation and impact exemplar with 1 in 2 new medicines coming from rare diseases research and many genomic and precision medicine solutions are generated from these conditions. Rare diseases are every healthcare providers business,  from primary  through to quaternary care. Amongst the range of healthcare providers, the world’s largest, and often most accessible workforce, is nurses. Therefore, a Global Nursing Network for Rare Diseases was established in 2023, membership is free and can be accessed here. Children and adults living with rare diseases and their families need all of us, they need our compassion, innovation and action.

A holistic cross-sector approach is required and that is why WA has established the first Rare Care Centre, others states are following. Collectively this is harmonising through the World Health Organisation Global Network for Rare Diseases.

How will you help ?

Nurses are vital in caring for people living with rare and undiagnosed diseases (PLWRUD) and often deliver the majority of care across the lifespan, including through screening, therapies and treatments, health education, care coordination and counselling. Nurses support rare and undiagnosed disease (RUD) patients and their families in coping with a diagnosis (or lack of) and often evaluate and monitor psychosocial consequences for patients. All nurses will care for someone with an RUD during their career, however the level of knowledge about RUDs among all healthcare providers is often insufficient and inconsistent. As the world’s largest healthcare workforce, and sometimes the only health care worker accessible, nurses are uniquely placed to pivot between clinical and non-clinical interfaces and elevate the voice of the RUD community.

Nurses who care for PLWRUD need to be globally connected and strategically positioned to influence the local, national and international advocacy platforms for PLWRUD. They also need to have access to education, resources and training, and opportunities to connect with peers to share expertise and experience, collaborate on research and projects and access funding pathways and scholarships. Through the leadership of the Rare Care Centre, and in partnership with the Department of Jobs, Tourism, Science and Innovation, Curtin University and SingHealth Duke-NUS Genomic Medicine Centre, the Global Nursing Network for Rare Diseases (GNNRD) was co-designed by nurse leaders and global RUD experts representing low, middle and high-income countries across five continents at the Singapore Roundtable held in March 2023 to create a platform to fulfil these needs.

The GNNRD is empowering 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 PLWRUD and their families. A reference group of nursing leaders and a steering group of global RUD experts are guiding the implementation of the GNNRD and timely delivery of tangible outcomes.

Through passive recruitment alone the GNNRD already has over 150 members from 35 countries. Since the GNNRD inception in March 2023, key activities which have been completed or are in progress include:

  • Launch of a comprehensive website and dedicated professional networking platform.
  • Publication on website of first sets of resources.
  • Nurse Scholarship for Artificial Intelligence in Rare Diseases developed together with Curtin University cross-disciplinary, Health and Science Faculties.
  • Invited presentations/ keynotes, local WA (3) and International (4).
  • Grant submission (Industry) to develop a global RUD nursing education program in partnership with Curtin University and Pearsons, an international education provider.
  • Grant submission, National Foundation for Australia-China Relations, DFAT, to develop a national nursing network for Rare Diseases in China and localise/translate the education program.
  • Grant Submission, Tanoto Foundation Medical Research Fund Singapore, to develop the foundation of a South-East Asian Regional Nursing Network. The first Regional Network under the GNNRD.
  • Planning for the development of a national nursing network for Rare Diseases in India through a one-day Symposium in 2024. The first National Network under the GNNRD.
  • Extensive networking and socialisation of the GNNRD with relevant organisations, in Australia and globally.
  • All activities have been coordinated from the Rare Care Centre and have provided WA impact first, and then globally. The WA leadership of the RCC, and its associated education resources is poised to attract and retain nursing staff in WA.

The next activities of the GNNRD are active recruitment of members through a marketing and communications campaign, finalising the GNNRD three-year organisation strategy, formalising the Lived Experience Advisory Group, and creating project/research funding opportunities through the Network, including to develop a rare and undiagnosed disease optimal care pathway and using AI to further identify pain points and solutions to improve the RUD patient journey.

Visit the Rare Care Centre in Perth at https://pch.health.wa.gov.au/Our-services/Rare-Care-Centre