Mrs Marie-Claude Boiteux (Chair Cutis Laxa Internationale – France) : Patients’ and Caregivers’ Perspectives : Patient Journeys
The « Patient Journey » is a personal testimony that reflects the natural history/needs of patients with a rare disease.
It represents the collective perspective on the burden of the disease and the needs of people with first-hand experience of living with a rare disease.
It is a baseline reference document for clinicians to develop a healthcare pathway and guidelines to address the identified needs.
Cutis Laxa is such an heterogeneous disease that we could not make only one « Patient Journey » but two to represent the specific needs of the patients with the different types of Cutis Laxa.