Patient pathways aim to improve the care and management of patients with a rare disease. These pathways include the “red flags” that may lead to the suspicion of the disease, the steps to reach a definitive diagnosis, and recommendations for management and follow-up. They are a very important tool in defining the best patient care and will be further validated and updated when necessary.
Within Europe, physicians collaborate not only within the ERNs (European Reference Networks) but also with patient organizations, such as CMTC-OVM, through the ePAGs (European Patient Advocacy Groups).
In this context, more and more patient pathways are being developed over time. Once a patient pathway becomes available, we include a reference to it under the relevant condition on our website.
Example: Patient Pathway
