With the support of EURORDIS, ERN CRANIO patient representatives have worked on developing ‘patient journey’ visuals. Creation of these documents asks patient representatives to reflect on their own personal journey with the rare disease they represent, engage with their patient community and map patient/family needs against 'ideal support scenarios’ at each clinical stage. These journeys can be continually reviewed and added to by others in the rare disease community.
Within ERN CRANIO patient journeys have been developed/are in development for: Cleft Lip/Palate, Pierre Robin Sequence, Craniosynostosis, Genetic hearing loss, Craniofacial microsomia and Treacher Collins Syndrome.
A poster on the ERN CRANIO patient journeys was presented at the 10th European Conference on Rare Diseases and Orphan Products (ECRD 2020) in May 2020.
An abstract on this topic has subsequently been published in the Orphanet Journal of Rare Diseases (November 2020) titled 'Patient Journeys': Personal experiences shaping clinical priorities
Please contact ERN CRANIO Project Manager Olivia Spivack for more information.