The IMPACT Survey is a successful collaboration between OIFE, Osteogenesis Imperfecta Foundation and Mereo BioPharma. It investigated the economic, clinical, and humanistic challenges of OI on affected individuals, caregivers, and the broader community. The second paper about caregivers offers an in-depth examination of the economic impact faced by caregivers: it reveals how the financial responsibilities…
The IMPACT Survey is a successful collaboration between OIFE, Osteogenesis Imperfecta Foundation and Mereo. It investigated the economic, clinical, and humanistic challenges of OI on affected individuals, caregivers, and the broader community. Now the first article on OI caregivers has been published. As described on the latest paper from IMPACT: Improved support is needed for…
In February I turned fifty. 50 years! When I see the number, I still cannot really grasp it. When I was younger, I felt fifty sounded really really old. And maybe it is? After all – I have probably lived more than half of my life. Have I accomplished everything I want? Do I still…
We are proud to share the newest article from the IMPACT survey, that was recently published: “The humanistic impact of osteogenesis imperfecta in adults”. It covers topics like: – How does OI affect the quality of life of adults with OI? – What are the drivers of impact on quality of life? – What do…
OIFE’s Stronger Together-project is ongoing and will have an important milestone at our capacity building conference in Valencia in September. The conference is for board members, staff and volunteers from our national OI-organizations. The goal is to make our member organizations better equipped to meet the complex reality that we’re living in – and give…
Launched in time for Wishbone Day 2024, the new IMPACT Survey website helps to raise awareness of osteogenesis imperfecta by capturing the lived experience of the condition, as told by people with OI, their caregivers and close relatives. On the IMPACT Survey website, you will be able to find out more about this landmark survey and…
The IMPACT Survey is an international research project exploring the real impact OI has on people’s lives. On March 21st the first article based on results from the IMPACT Survey was published in Orphanet Journal: “The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and…
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…
An article called “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review” was published recently in Orphanet Journal of Rare Diseases. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and…
