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…
On February 8th a European Parliament event took place, hosted by Member of Parliament (MEP) Frédérique Ries and organised in collaboration with EURORDIS. The event was in the framework of Brussels Rare Disease Week 2023, to reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people…
Interview with Ole Rasmus Theisen, dentist and researcher at the TAKO centre (national resource centre for oral health in rare disorders, Norway) My name is Ole Rasmus, and I am a 39-year-old dentist from Norway. My relationship with OI stems back from working with researchers who have studied OI extensively as well as seeing some…
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…
Interview with Natalie Lloyd, author of bestselling novel Hummingbird I’m Natalie and I’m an elder millennial (born in 1981). I live in Tennessee with my husband, Justin, and our three spoiled dogs. In college, I studied journalism, but creative writing was always my first love. I feel very blessed to be able to say writing…
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…
