Care pathways & Adult OI Networks in the UK

Written by Patricia Osborne CEO of Brittle Bone Society and Professor Kassim Javaid When adults with rare bone conditions turn 18 they mostly have no dedicated adult clinics or services to transition to. Because of an initiative from the BBS, there is now an official Rare disease collaborative network┬á(RDCNs) established for adults with different rare…


Patient Journey vs. Care pathways

Patient Journeys are service improvement tools that capture the natural history of a rare condition and the needs of patients through the day-to-day experiences and life-lens of people living with a condition. We were four people from OIFE who attended the webinar on patient journeys organized by EURORDIS on March 20th. You can find most…

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