Interview with Téa La, Community Development Officer for CLAN (Caring & Living As Neighbours) At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an…
My name is Isis Atuncar, I am from Peru, and I was diagnosed with OI when I was born in 1986. I had the opportunity to receive medication and surgical treatment in the USA. That treatment improved my quality of life. When we were back in Peru, my parents and other families together formed the…
Interview with Jacob Ø. Wittorf, Denmark Tell us a bit about yourself! My name is Jacob, and I’m a new member of the OIFE-board and also member of the board of the Danish OI Organization, DFOI. I have OI type 3 and was born in a small town in southern Jutland, Denmark, 42 years ago. However,…
Matilde Medum Nielsen has volunteered to help on the OIFE Youth Coordinator team. Matilde is from Denmark and was born with OI type III. She has been living in Aarhus her entire life until July 2022, when she moved to Townsville in Australia to study and fulfill her dream of becoming a marine biologist. Besides…
The Balancing Act: Navigating Pain and Life with OI in Stockholm 34 percent of all individuals with OI report that pain has influenced their career choices, and 30 percent also state that pain affects their social life. This is just one of the many facts we learned during the OIFE’s Balancing Life With OI conference…
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…
At OIFE’s Annual General Assembly on June 10th, we were happy to announce that the OIFE Board has accepted the membership application from the NGO CLAN (Caring & Living as Neighbours), to become a supporting member of OIFE. CLAN is an Australian-based, not-for-profit, non-governmental organisation (NGO). Who is CLAN? CLAN was founded in 2004 and…
On June 10th and 11th 2023, we came together for OIFE’s Annual General Meeting (AGM). This time we met, in real life, in Stockholm, Sweden. There were approximately 40 people representing 15 ordinary (European) and 4 associate member organizations (incl. USA, Peru, Ahuce Foundation and Care4BrittleBones). On Saturday afternoon we took care of the formal…
OIFE’s 5th Topical Meeting “Balancing Life with OI” will take place in Stockholm, Sweden, from June 9-10 2023. The main topic of this international conference is pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. The scope will also cover other rare bone conditions. Anyone interested in the…
