A rare disease is a health condition that affects a small number of people compared with other prevalent diseases in the general population. Empirical research shows that patients with severe illnesses prefer the physician to dominate decision processes and provide the information needed. However, in rare diseases, due to the low prevalence and the lack of expertise, the patient and their family is forced to become knowledgeable about his/her/their own disease state1.

Clinical Empathy is one of the key determinant of quality in medical care, because it enables the clinician to fulfil key medical tasks more accurately, thereby achieving enhanced patient health outcomes2. The objective of this project is to create and launch an empathy based eLearning outreach programme for Healthcare Professionals on Huntington's Disease (based on the initial findings from HealthE-RND Study). Understanding patient experiences of rare diseases, specifically Huntington's Disease will develop an empathic practice  in Healthcare professionals that is individualised and attuned to the needs of individuals with rare diseases and their caregivers, specifically Huntington’s disease (HD). It will enhance the understanding of a HD patients situation in a holistic way. This eLearning programme will be an adjunct to the Huntington's Service Portal which is patient and family resource developed as part of the HealthE-RND project (https://healthe-rnd.eu/).

  1. https://www.sciencedirect.com/science/article/pii/S0168851012000644 
  2. https://www.sciencedirect.com/science/article/abs/pii/S0738399108006290


Award Date
12 September 2022
Award Value
Principal Investigator
Professor Jennifer Hoblyn
Host Institution
Trinity College Dublin
Knowledge Translation Awards