New conect4children Consortium will include a study on Losartan as a treatment for osteogenesis imperfecta. The conect4children (c4c) consortium announced on April 29th the selection of its first portfolio of pan-European paediatric studies aimed at advancing the understanding of high priority medicines commonly used in babies, children and young people in Europe. The four inaugural…
Are you a clinician or researcher interested in OI? Then the conference Quality of Life 4 OI is waiting to hear from you. Key dates to keep in mind: 1 June 2019, 23:59 CET: Abstract submission deadline 1 July 2019: Notifications to authors Submitting your abstract provides you with an opportunity to: gain visibility for…
2 Weeks left until Early Bird Deadline! Are you a professional who’s interested in eyes, ears and teeth of people with OI? Or basilar invagination (BI)? Do you yourself have issues related to this? Then we invite you to take part in our seminar See, Hear, Smile! from June 14th – 15th in Riga, Latvia.…
HAVE YOU EVER RECEIVED TREATMENT FOR YOUR OI? Then OIFE & EURORDIS is interested in hearing from you. Take 10 minutes to complete the new #RareBarometer survey on your experience of rare disease treatments and share your views. Survey available here in 23 languages: http://bit.ly/eurordis-survey NOTE! New this time is that you don’t have to…
In 2019 Care4BrittleBones would like to build up a network to foster knowledge exchange around psychosocial aspects of OI. The network will be led by Dr. Kara Ayers (photo) from Cincinnati children’s hospital, USA and Dr. Claire Hill from Sheffield’s children hospital, UK. The purpose of the network is to explore key topics of shared…
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…
There is a lot of information about osteogenesis imperfecta on the Internet. But how do you know where to find information that is good and up to date in your country or language? We recommend searching the OI-organizations for advice. Information in English can be found here: OIFE’s information about OI OIF’s Information Center BBS…
On the occasion of the 13th International Conference on Osteogenesis imperfecta in August 2017 an expert panel was convened to develop an international consensus paper regarding physical rehabilitation in children and adolescents with Osteogenesis imperfecta. The paper has now been published. The project was initiated by OIFE’s supporting member Care4BrittleBones, but OIFE assisted with spreading…
The Spanish research foundation Fundación Ahuce has launched a new research project in collaboration with the University of Valencia. The OIFE encourages as many people with OI as possible to take part – even if chronic pain is an issue for you or not. People from all countries can participate as long as they can…
