Did you know that OIFE was one of the contributors to the Covid-19 and OI survey that the Brittle Bone Society initiated? Now the article has been published in Frontier’s magazine. Background: Research on the effects of the COVID-19 pandemic on people with rare diseases is limited. Few studies compare healthcare throughout the progression of…
OIFE is a member of the European Rare Bone Forum (ERBF). A while ago they initiated a project to try to get a better overview of the unmet needs in rare bone conditions – especially regarding research & development: https://rarebone.org/news-rare-bone-diseases/projects/ OIFE promised to support the ERBF project a long time ago – but unfortunately some of…
Are you 18 years or older and do you have OI? Or are you the parent/caregiver of someone aged 0-17 with OI? Are you able to read and write English well? Then OIFE and our collaborators are looking for your help! The pharma company Ultragenyx is developing a new treatment for OI. To test the…
Professor Kara Ayers from the US have three children of her own. Now she’s working together with the researcher Leanne Baird, who’s a genetic counseling student, to find out more about the role OI plays when young people are making future decision about having children. Kara and her student need young adults with OI aged…
We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…
The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…
Who is behind the survey? OIFE and the OIF are assisting with the distribution of a survey developed by a project team supported by Care4BrittleBones. The team consist of professionals interested in increasing the knowledge about the physical well-being of individuals with Osteogenesis Imperfecta (OI). Project team Kathleen Montpetit, Occupational Therapist (retired), MSc OT, Montreal,…
We need your help! OIFE and EURORDIS need your opinion on future policy for people with OI and other rare diseases! If enough people with OI worldwide provide an answer to this survey, it will help us shape the future of rare disease policies regarding access to health care, medical and social research and diagnosis…
A group of orthopedic surgeons in the USA with extensive experience in treating OI have come together to learn even more about the patient experience. Please take a moment to complete this survey: https://www.surveymonkey.com/r/J9653VK Your participation will help these OI experts better understand the needs of people living with OI. A message from dr. Flanagan,…
