Care Pathways for Rare Diseases

Care pathways describe the process involved in managing a clinical condition. They include details on what to do, when to do it​, who does it, and where​.

The National Rare Diseases Office has developed a series of integrated care pathways for rare conditions. These care pathways are based on clinical practice guidelines and developed in collaboration with national clinical experts and Irish patient organisations.  

The development of care pathways is a priority for the health service. This is further outlined in the Irish healthcare policy for integrated care, Sláintecare and European rare disease policy as recommended by the European Reference Networks.  

The care pathways aim to:

  • empower those affected by rare conditions to navigate the health service
  • increase knowledge and awareness of rare conditions
  • improve patient outcomes (more timely diagnosis, reduce waiting times to access services)
  • support delivery of integrated multi-disciplinary care
  • enhance links between across acute, primary and community care services
  • be educational and clinical support tools
  • enhance clarity of roles and responsibilities

More information on the care pathways project is available by clicking on the link below:

Designing Rare Disease Care Pathways 2022 (PDF, size 1.8 MB, 14 pages)

‘Eurordis’, the European Rare Disease patient alliance, cited this work as best practice. More information is available by clicking on the link below:

Eurordis Best Practice Care Pathways (PDF, size 121 KB, 2 pages)

The National Rare Diseases Office would like to thank 'Rare Disease Ireland’ and the many patient experts, clinical leads and multidisciplinary teams who generously gave their time, knowledge and expertise to the development of these care pathways.