Podcast
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, updated on April 2024
Patient Journey – Hereditary Spastic Paraplegias (HSPs), updated on November 2022
- English
- Bulgarian
- Chinese (Simpl.)
- Chinese (Trad.)
- Czech
- Danish
- Dutch
- French
- Finnish
- German
- Italian
- Polish
- Portuguese
- Spanish
Patient Journey – Huntington’s Disease, updated on January 2022
- English
- Bulgarian
- Czech
- Danish
- Dutch
- Finnish
- French
- German
- Greek
- Hungarian
- Italian
- Lithuanian
- Polish
- Portuguese
- Spanish
Patient Journey – Cervical Dystonia, updated on April 2023
Patient Journey – Alternating Hemiplegia of Childhood (in cooperation with epiCARE)
Patient Journey – Multiple System Atrophy (MSA), updated on April 2024
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.
Revision Process for Patient Journeys (PJ) following feedback/comments by clinicians, ePAGs, external persons
- Continuously collect feedback on patient journey
- Commenting persons will be informed about revision process
- Every 12 months incoming feedback/comments will be assessed as to whether they require a change of PJ
- In case yes – received changes will be summarized and given to ePAG members and DG coordinators for assessment
- Positively assessed changes will be used to adapt PJ (including translations)
- Inform persons who provided comments/feedback about updated PJ
Please contact us if you have any feedback, we will then follow the revision process
Patient Experience as Short Movies
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Meet Catherine and Julie and watch the two friends talk about the different stages of their diseases, as those progress over the years – one is affected by Dystonia, the other is from a Huntington’s Disease family.
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Countless visits to doctors, the feeling of “something’s wrong”, being undiagnosed for years – many rare disease patients are familiar with that. Our patient journey movie on Dystonia shows the different stations of the disease as it progresses – from first symptoms over diagnosis to treatment – and how it affects a patient’s everyday life as well as ways of coping.