The 2nd Remedi4All multi-stakeholder meeting “Ensuring patient centricity in Osteogenesis imperfecta research” has taken place in Bologna on 13th June 2024. OIFE was represented by several representatives of the OI Community giving examples and highlighting the importance of patient engagement and patient centricity in OI research, design and follow up of clinical trials, treatments and…
In January 2022 a new multidisciplinary (MDT) clinic for osteogenesis imperfecta was established in Ghana. We did an interview with the initiator and woman behind it – Mrs. Justina Yiadom-Boakye, the president and Founder of OIFE’s associate Member Ghana (OIF Ghana). Who are you and what is your relationship with OI? I am Mrs Justina…
Who are you and what is your relationship to OI? I am Dagmar Mekking from the Netherlands. I am a mother of a 15 year old daughter with OI. Also I am the director of Foundation Care4BrittleBones. The purpose of the foundation is to improve quality of life for people with OI through research. What…
Physicians of all specialties, nurse practitioners, physician assistants, and other healthcare professionals with an interest in rare bone conditions are welcome to attend monthly case-based telementoring presentations and discussions. The webinars are primarily for professionals in the US, but professionals from other countries can also ask to join. Presented by OIFE’s partners the Osteogenesis Imperfecta…
What is the Transfer Tool? The OI transfer tool is a portable, clinically meaningful, person-focused tool designed to help improve the transition experience for adolescents and young adults living with OI. Once completed, the tool summarizes the adolescents’ time spent receiving OI care in the paediatric setting, and is intended to be given to their…
