For some rare or complex conditions, there are no clinical guidelines available at present. For some diseases, these are available but some may require review and revision.
ERN CRANIO seeks to endorse, develop or revise existing clinical guidelines to ensure clinical recommendations are made available to clinicians, patients and their families/carers based on research of the highest quality. See resources page.
Areas of focus: Development of clinical guidelines/consensus statements for more diseases, implementation of guidelines in ERN CRANIO centres, development of patient versions of guidelines.
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.
See resources page.