The Evenity trial (romozosumab) is currently recruiting in the following countries: Australia, Austria, Belgium, Canada, China, France, Germany, Hungary, Japan, Poland, Slovakia, Spain, Switzerland, Turkey, United Kingdom and the USA. You can find more information about the Evenity trial and the sites included here. If you are wondering what clinical trials are, you can check…
Interview with Dr Jean-Pierre Chanoine, MDPhD, FRCPC (Academic), Clinical Professor, Endocrinology and Diabetes Unit British Columbia Children’s Hospital, President Global Pediatric Endocrinology and Diabetes (GPED), Vancouver, Canada Who are you and what is your relationship to OI? I am a paediatric endocrinologist with a longstanding interest in Osteogenesis Imperfecta (OI). I provide clinical care for…
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…
Interview with Dr. Winnie Liu, Oregon Health and Science University (OHSU), Portland, Oregon, USA Dr. Winnie Liu is an adult endocrinologist and takes care of patients at Oregon Health and Science University (OHSU) located in Portland, Oregon. Her clinical and research interests are metabolic bone disease with a focus on OI after joining the BBDC (Brittle…
Interview with Ole Rasmus Theisen, dentist and researcher at the TAKO centre (national resource centre for oral health in rare disorders, Norway) My name is Ole Rasmus, and I am a 39-year-old dentist from Norway. My relationship with OI stems back from working with researchers who have studied OI extensively as well as seeing some…
A summary by Lidiia Zhytnik, member of OIFE’s Medical Advisory Board On September 9, 2021 the IntOI 2020+1: Virtual International Meeting Early Stage Investigators Symposium, took place. It was organized by the OI Foundation and chaired by Dr. Joan Marini. The meeting highlighted OI research, performed by young investigators all over the world. The OIFE…
The IMPACT Survey is a joint initiative between OIFE, OIF & Mereo BioPharma. The survey will be launched in summer 2021 and we will need the help of all our member organizations and the OI-community to spread the word and encourage as many people with OI (and parents) to fill in the survey. Written by…
For a number of years treatment of OI was mostly limited to bisphosphonates, surgical interventions and physiotherapy. Well basically it still is, if you think of approved and standardized treatment (if such a thing exists in OI). The group of drugs called bisphosphonates actually celebrates its 50th anniversary this year. And for the last 25-30…
From August 3rd – 6th 2019 the Chinese OI society (China-Dolls) celebrated their 10th anniversary in Yantai in the east of China. They organized a medical conference two days before the meeting. During this conference three international experts (Dr. Frascini from Italy, Dr. To from Hong Kong and Dr. Semler from Germany) gave lectures and…
