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…


Adult Health Toolkit

NEW RESOURCE FOR ADULTS WITH OI Check out the new resource from our friends in the USA, which in our opinion must be the best thing since sliced bread: “The Adult Health Toolkit” made by the Osteogenesis Imperfecta Foundation is: “Information for Adults Living with OI, Their Families, and Medical Professionals” to help you navigate…

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