ERN-RND Patient Journeys

Patient Journeys are a useful educational tool for those with the rare disease. In addition, it is an ideal tool for doctors who are not experts in the area, accident and emergency, general practitioners and other health care professionals. (Mary Kearney, patient advocate at the ERN)

Patient Journeys  are info-graphical overviews that visualize patients’ needs in the care of their rare disease. Because Patient Journeys are designed from the patient’s perspective, they allow clinicians to effectively address the needs of rare disease patients.

Patient Journeys consider that patients’ needs may differ at different stages of the disease – e.g., initial symptoms vs. treatment. They also reflect the patients’ personal experiences, which may vary depending on the person, clinic and country.

ERN-RND considers Patient Journeys working documents that patients and clinicians can use together to identify gaps in care and adapt care pathways to better meet the needs of patients living with these conditions. Patient Journeys can therefore be seen as a first step toward systematic patient engagement in the design of care pathways.

In addition, Patient Journeys are a useful resource for patients, families, non-specialist clinicians, and the general public to understand the care needs of patients living with a rare neurological disease.

ERN-RND provides so far the following Patient Journeys:

Patient journey – Friedreich’s Ataxia

Patient Journey - Hereditary Spastic Paraplegias (HSPs)

Patient Journey - Huntington’s Disease

Patient Journey - Cervical Dystonia

Patient Journey - Multiple System Atrophy (MSA)

The different Patient Journeys are also available as flyers

The ERN-RND Patient Journeys have been developed in collaboration with the ERN-RND Patient advocates.