We’re inviting women with osteogenesis imperfecta (OI), age 35 and older, to take part in a new survey focused on menopause and OI. This project is part of the OIF Adult Health Initiative and is being conducted through The Global Adult OI Initiative, an international collaboration of OI clinicians, researchers, and patient advocacy partners, including contributors…
The OIF and OIFE are gathering community perspectives related to gastrointestinal (GI) health and OI in a new survey. The survey findings will be shared in future OIF publications, guide future programs, and inform the larger OI research community including research presentations. Responses are anonymous, and it will take approximately 15 minutes. Please take the…
The IMPACT Survey – how we identified knowledge gaps and created a meaningful survey for the OI-community The IMPACT Survey was an international research project exploring the real impact OI has on people’s lives. The survey was run by Sam and Maria from the Wickenstones Company – an experienced scientific agency who, OIFE, OIF…
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…
