Models of Care for Care Coordination

IRDiRC - Models of Care for Care Coordination

Introduction

Models of care are critical to achieving the IRDiRC’s goals, as they strengthen diagnosis, inform therapeutic development and access, and enable evaluation of the real-world impact of diagnosis and treatment. A model of care provides the overarching structure for delivering healthcare services, defining the resources, roles, and processes required to support a specific population through evidence-based standards and coordinated practice. Within this framework, care pathways offer detailed, step-by-step guidance for managing individual patients over time. For rare diseases, models of care must extend beyond clinical management to integrate health, social, and research dimensions, reflecting the complex, multi-system nature of these conditions. Developing coordinated, research-informed models of care, co-designed with patients and families, is therefore essential to ensure holistic, equitable, and sustainable services for persons living with rare diseases.

Objectives

The overall objectives of this Task Force are to:

  • Identify the state of play and generate new knowledge to advance the development, implementation and evaluation of models of care coordination
  • Mapping outcomes into a framework for equitable AI, address EHR-rich and EHR-scare environments

Timeline

Recruitment and assembly of the Task Force Group (Q1, 2026)

Kickoff Meeting (Q2, 2026)

Members

  • Gareth Baynam (Co-Chair) – Rare Care Center Perth Children’s Hospital, Australia
  • Mary Wang (Co-Chair)  – Genespire, Italy
  • Kasper Hermans – UZ Brussel, Belgium
  • Laurène Mathey – ERN EpiCAre, University Hospitals of Lyon, France
  • Roser Francisco Bordas – Sant Joan Déu de Barcelona, Spain
  • Will Evans – Leeds Clinical Genomic Service, UK
  • Ahmed Yussif – Rare Disease Ghana, Ghana
  • Andreea Badache – World Health Organization, Sweden
  • Diana Kwast-Hoekstra – (Un)limited Forward! Foundation, Netherlands
  • Graham Slater – EURORDIS, UK
  • Imane Chahid – CHU Ibn Rochd Casablanca, Morocco
  • Katherine Beaverson – Parent Project Muscular Dystrophy, USA
  • Persefoni Kritikou – Rare Disease Consulting, Greece
  • Ritu Jain – DEBRA International, Singapore
  • Sara Brambilla  – Rare Diseases International, Italy
  • Sue Baker – Rare Care Center Perth Children’s Hospital, Australia
  • Trudy Nyakambangwe – Rare Disorders Zimbabwe, Zimbabwe