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…
My name is Malene Sillas. I‘m 27 years old (soon to be 28) and I was born with OI type 1/4. Since I was born, my family has attended the national OI meetings in Denmark, and through these meetings, I have made lifelong friendships that are still a very important part of my life today.…
In September 2022 we met two OI-professionals from Kazahkstan at the Sheffield OI conference. This was dr. Assem Dossanova and her husband professor Dossanov (photo on the right), who is one of the central orthopaedic surgeons in the Asian country, with a small percentage of the country situated in Europe. The couple told us that…
OIFE’s peer group Adult Health & OI is a closed Facebook-group for adults who have OI (English language only). We welcome participants from all countries, as long as you can communicate in English. A closed group means that only people who have been accepted by the moderators and who are part of the group can…
By Jennifer Cowley, Representative of OIFE’s Associate Member Australia My name is Jennifer (Jenny Cowley). I have Type 1 OI and so have 13 of my family members. I represent the Osteogenesis Imperfecta Society of Australia as the newly elected President. OI affects me personally by slowing me down when I get older. When I…
Interview with Jacinta Whyte, President and Chair of COIS (Canadian Osteogenesis Imperfecta Society) The Canadian OI-organization became an associated member organization of OIFE in October 2022 and we are very happy to welcome them to our international OI-community. Who are you and what is your connection to OI? My name Is Jacinta Whyte and I…
February 7th OIFE had the pleasure to meet (online) the founder of a Vietnamese organization for rare diseases (VORD), which focuses (at the moment) on OI, SMA and Duchenne. Their co-founder Ly Ngo has OI herself and they have a lot of collaboration with scientists and other stakeholders. You can find them online on: https://www.rarediseases.vn/
Hello everyone! 35 years ago I was born in Bruges, Belgium with OI type 3. From birth, I was involved with the Belgian Patient Organization ZOI. In 2020 I got elected to the board of ZOI. I love to be with other people who have OI to share experiences, knowledge, advice both as a friend, but…
The OI Foundation and the OIFE have partnered on a new project investigating the experience of pain for people with OI. The following survey investigates the experience of pain for people with OI. This survey is for anyone 18 years old or older and was written with input from OI experts from North America and…
