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Updated: Jun 1, 2025

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Rare care - Cross-sector care coordination.

Gareth Baynam1, Joanne Siffleet2, Theresa Abbott2

  • 1Rare Care Centre, Perth Children's Hospital, Western Australia, Australia; Undiagnosed Diseases Program -WA, Genetic Services of WA, King Edward Memorial Hospital, Western Australia, Australia; Western Australian Register of Developmental Anomalies, King Edward Memorial Hospital, Western Australia, Australia.

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A new Model of Care improves health for children with rare and undiagnosed diseases through cross-sector coordination. This approach enhances wellbeing and guides professionals in creating better services for affected families.

Keywords:
Care coordinationCross-sectorModel of careRare and undiagnosed diseases

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Area of Science:

  • Pediatrics
  • Public Health
  • Healthcare Management

Background:

  • Rare and undiagnosed diseases pose significant global health challenges.
  • These conditions require complex care and impact all aspects of children's and families' lives.
  • Existing healthcare systems face difficulties in managing the cumulative frequency and low prevalence of these diseases.

Purpose of the Study:

  • To outline the development of an innovative Model of Care for Western Australian children with rare and undiagnosed diseases.
  • To emphasize cross-sector care coordination as a strategy to improve health and wellbeing.
  • To provide insights for healthcare professionals to enhance services for individuals with rare and undiagnosed diseases.

Main Methods:

  • Development of a novel Model of Care.
  • Focus on inter-sectoral collaboration and care coordination.
  • Qualitative insights and service development guidance.

Main Results:

  • An innovative Model of Care has been developed.
  • Cross-sector care coordination is highlighted as key to enhancing patient outcomes.
  • The model provides a framework for improving services for rare and undiagnosed diseases.

Conclusions:

  • The developed Model of Care offers a structured approach to address the needs of children with rare and undiagnosed diseases.
  • Cross-sector collaboration is crucial for improving the health and wellbeing of this patient population.
  • The insights gained will support healthcare professionals in creating more effective and supportive services.