MEDICAL

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 (RDCNs) established for adults with different rare…

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Graphic data from the Impact surveyMEDICAL

Adult Health resource group

Interview with Eric Orwoll, Professor of Medicine, Division of Endocrinology, Diabetes and Clinical Nutrition, School of Medicine and Dr. Lars Folkestad, member of OIFE’s Medical Advisory Board Due to common interests in adults with OI, Prof. Eric Orwoll and Dr. Lars Folkestad identified researchers and clinicians who have worked on adult care and formed a…

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MEDICAL

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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EDITORIALS

Pain, Pink Elephants and Peer Support

By Ingunn Westerheim, OIFE President I am going to start this editorial with a quote from the Australian physiotherapist Verity Pacey. You can read an interview with Verity in this OIFE Magazine, which is a special edition about OIFE around the world. “Don’t wait for your healthcare team to ask you about pain and fatigue…

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Adults with OIOIFE

Join OIFE’s Adult Health peer group

OIFE’s peer group Adult Health & OI is a closed Facebook-group for adults who have OI (English language only). We welcome participants from all countries, as long as you can communicate in English. A closed group means that only people who have been accepted by the moderators and who are part of the group can…

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