Patient journeys are guides written by patient themselves that describe a rare disorder through the day-to-day experiences and life-lens of those living with the condition. In other words, they depict what is, for a specific condition, the typical clinical pathway patients go through.
Patient Journeys are meant to quickly provide easy-to-grasp information to all kinds of publics. Hence they are typically very short and visual (see example below) They are targeted to :
- patients themselves – information is crucial to empower patients and engage them in the decision-making around their care;
- healthcare professionals such as nurses, psychologists, general practitionners or any kind of professionnal that is not familiar with a given rare disease ;
- the general public who wants to grasp what are rare diseases and what is the life of those living with it.
Example of the Prader Willi Patient Journey (downloable below)
The ITHACA Guidelines Workgroup works on writing new Patient Journeys for rare malformative conditions or neurodevelopmental disorders. So far, Patient Journeys for the following rare diseases have been published by the ERN.
We encourage patients to use them and to send them to any healthcare professionals they might encounter, and healthcare providers themselves to share them with their patients.
The ERN has also issued a Patient Journey not specific to any particular condition but to explain the common needs of all patients with rare congenital anomalies or rare neurodevelopmental disorders: