IMPACT SURVEY – First article published
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…
Meet Rageema from South Africa
Interview with OIFE Representative Rageema Livingstone, Representative of OIFE’s Associate Member South Africa Who are you and what is your relationship to OI? My name is Rageema Livingstone and I live with my husband and 3 kids in a suburban area of Cape Town South Africa. I have a 16 year old daughter with type…
Functional performance in everyday activities
Interview with Verity Pacey, Physiotherapist & researcher, Sydney, Australia My name is Verity Pacey and I’m a physiotherapist from Sydney, Australia. I began working with children with OI around 20 years ago now. I had the privilege to work in a specialist multidisciplinary clinic for children with OI – the only one in Australia at…
Pain, Pink Elephants and Peer Support
By Ingunn Westerheim, OIFE President I am going to start this editorial with a quote from the Australian physiotherapist Verity Pacey. You can read an interview with Verity in this OIFE Magazine, which is a special edition about OIFE around the world. “Don’t wait for your healthcare team to ask you about pain and fatigue…
EURR-BONE Final Meeting
On February 13th we were four representatives from OIFE who attended the final meeting of the EuRR-Bone registry as a 3 year old project. Claudia Finis attended face to face and Taco van Welzenis, Rebecca Tvedt Skarberg and Ingunn Westerheim attended online. The project team in Leiden have delivered on all their milestones, and has…
Meet new OIFE Board member Malene Sillas
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.…
Meet Andrea from Chile
Interview with Andrea Medina, Representative of OIFE’s Associate Member Chile Who are you and what is your relationship to OI? I’m the founder and chairwoman of the board of Fundación de Osteogénesis Imperfecta Chile (FOICH). I have OI myself, and that is why my interest was born in creating an organization that brings together people with…
New OIFE Member OI Kazakhstan
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…