Patient Journey

A "journey" through the diagnosis, the adequate treatment and the appropriate monitoring of various rare kidney diseases

Source: Solve-RD infographic on the patient journey to diagnosis - EURORDIS

This educational tool was created by our ePAGs and reviewed by our medical experts at ERKNet, specifically for patients with the rare kidney diseases. It is intended to serve as a helpful and supportive overview.

By looking at the journey from the patient's point of view, healthcare providers can effectively address the specific needs of patients with rare kidney disease. These Patient Journeys recognise that patients' needs may change as the disease progresses, taking into account initial symptoms and subsequent stages of treatment.In addition, Patient Journeys incorporate the summary of group experiences from different European communities, made by Patient Advocates, which may vary according to individual circumstances, clinical conditions and even geographical location.

At ERKNet, Patient Journeys serve as dynamic documents that foster collaboration between patients and clinicians and facilitate the identification of gaps in care and the adaptation of care pathways to better meet the needs of individuals.

In essence, Patient Journeys are a first step in establishing a structured approach to patient involvement in care pathway development. In addition, they serve as a valuable resource for patients, their families, non-specialist clinicians and the public, as they improve their understanding of the unique care needs of rare kidney disease.

If you want to participate in the development of a new patient journey, please contact our ePAG chairs:

Rare Renal Diseases - Common Patient Journey

Bartter Syndrome Adults

Bartter Syndrome Children


Alport Syndrome



Familiar Hypomagnesemia without severe ocular involvement

Familiar Hypomagnesemia with severe ocular involvement

Familiar Hypomagnesemia

Gitelman Syndrome

Kidney Bilateral Hypodysplasia & RVU