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.
The Patient Journey for Rare Neurological Diseases was developed by the ERN-RND ePAG representatives Astri Arnesen (European Huntington Association), Monika Benson (Dystonia Europe), John Gerbild (Denmark Association for Ataxia and HSP), Natalia Grigorova (Bulgarian Huntington Association), Sara Hunt (Alex, The Leukodystrophy Charity), Mary Kearney, Friedreich’s Ataxia Research Alliance Ireland (FARA), Juliane Krabath (Stopp-HSP), Lori Renna Linton (Euro-HSP), Lubomir Mazouch (Czech Association of Atypical Parkinsonian Syndromes) and members of the clinical focus group ‘Patient Juorney – Rare Neurological Diseases’.
You can download the infographic and table as pdf file by clicking on the images.
Find here the patient journey about Rare Neurological Diseases as a flyer.
If you would like to translate this patient journey in your own language, please contact us and we will send you the documents to do so.
If you want to print this patient journey as a flyer for your organisation, please contact us to get the print file.