Draft report on rare diseases in Ireland released

The National Clinical Programme for Rare Diseases (NCPRD) have released a report entitled Draft Model of Care for Rare Diseases. The Programme itself was founded by the Health Service Executive (HSE) and the Royal College of Physicians Ireland (RCPI) in order to:

  1. “Improve access to care. Patients with rare diseases and their families should have access to quality information and support to enable accurate and timely diagnosis and access to appropriate specialist care;
  2. Improve quality. Clinical expertise for rare diseases should be provided through a network of National Centres of Excellence/Healthcare providers or at designated centres abroad;
  3. Improve value. Timely access to appropriate diagnosis and care should result in decreased mortality, morbidity and disability and be cost-effective.”

This report, therefore, makes suggestions of how these goals can be achieved, proposing a pathway for clinicians to follow with their patients. Recommendations include the setting up of a new orphan disease coding system (Orphacodes), a registry of orphan diseases, rare disease centres of expertise for treatment, and a model for transitioning from paediatric to adult care.

MAP will continue to monitor this developing field in Ireland. For more information on the NCPRD, please see the National Rare Diseases Office website.

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Published 3. July 2018 in News, News Ireland