The ICCBH are now the International SOCIETY of Children’s Bone Health, and they are ready to accept members! The International Society for Children’s Bone Health is a scientific society dedicated to achieving the best bone health for every child across the globe through research, education, collaboration and advocacy. Emerging from the long-running ICCBH they are…
The EURORDIS Open Academy School on Medicines Research & Development (Summer School) aims to provide rare disease patient advocates with the knowledge and skills needed to become experts in medicines research and development. Since 2015, researchers are also welcome to attend the School. Also this year people connected to OIFE were attending EURORDIS Summer School…
Physician statements on children with severe types of OI Dear colleague, In the literature there is very limited information on fracture incidence during the first years of life in children with OI type III and IV on early bisphosphonate treatment. We understand your busy schedule, but we would appreciate your quick input on the statement…
The call from the European Reference Network on Rare Bone Diseases (ERN BOND) for building a working group around the use of High Resolution peripheral Quantitative Computed Tomography (HR-pQCT) in OI is still open, closing June 20th 2023. What is HR-pQCT? HR-pQCT can quantify bone microstructure in-vivo at a very low radiation dose, and could…
Written by Lars Romundstad, OIFE volunteer from Norway EURORDIS is the umbrella association for organizations for rare conditions in Europe. And the 26th and 27th of May 2023, OIFE was represented at the EURORDIS Membership Meeting in Stockholm. Lars Romundstad, represented the OIFE together with Rebecca Tvedt Skarberg, who is also a Board member of…
As you may be aware, the company Ultragenyx is sponsoring a research study, titled Orbit, to determine the safety and efficacy of setrusumab (UX143), for the treatment of OI. The Phase 2 portion of this study was completed in February with 24 patients and they have announced the interim results. Click here to read the full…
Interview with Dr. Michael T, University of Hong Kong and Shenzhen In most countries, pediatric surgeons are not allowed to operate on adults with OI because of the way hospitals are organized. Usually, the surgery is performed by an adult physician who knows about one body part (like hip, fingers, knee, pelvis etc). What are…
Interview with Dr. Guus Janus, ISALA Treatment Center Zwolle, The Netherlands In most countries, pediatric surgeons are not allowed to operate on adults with OI because of the way hospitals are organized. Usually, the surgery is performed by an adult physician who knows about one body part (like hip, fingers, knee, pelvis etc). What are…
Interview with Dr. Jeanne Franzone, Nemour’s Children’s Hospital, Wilmington, USA In most countries, pediatric surgeons are not allowed to operate on adults with OI because of the way hospitals are organized. Usually, the surgery is performed by an adult physician who knows about one body part (like hip, fingers, knee, pelvis etc). What are the…
