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,…
Interview with Liana la Forgia, volunteer and a member of the scientific board of A.C.A.R. Aps, the Italian patient association for Multiple Osteochondromas (MO) OIFE has for many years had a project called “A stronger BOND between us”. The goal behind the project is to further develop an informal network between different stakeholders working on…
By Ute Wallentin, OIFE Social Network and Board member of the German OI-Association (DOIG) When OI-children or adults or members in general from our association die, how do we want to deal with the news of their death? And if they die (much too) young, what offers can we make to the surviving relatives? Ute…
We invite you to register for a 1,5 hour webinar called “Clinical Trial Update 2023”. The goal of the webinar is to update the OI-community about ongoing clinical trials – both those who are recruiting and others. This includes the following trials: – The Cosmic and the Orbit trials (setrusumab) – The BoostB4 trial (stem…
On June 27 OIFE volunteer Rebecca Tvedt Skarberg represented EURORDIS at the EU Meeting “A Union of Equality: Disability Rights and Strategies”, which was a seminar on examples of how to reach equality by using strategies to realize the rights of persons with disabilities. In order to highlight and raise awareness of the EU strategy…
Interview with Dr. Winnie Liu, Oregon Health and Science University (OHSU), Portland, Oregon, USA Dr. Winnie Liu is an adult endocrinologist and takes care of patients at Oregon Health and Science University (OHSU) located in Portland, Oregon. Her clinical and research interests are metabolic bone disease with a focus on OI after joining the BBDC (Brittle…
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…
In OIFE Magazine 2-2023, we interviewed Clara I. Rodríguez who is the group leader of Stem cells and Cell therapy laboratory at Biocruces Bizkaia Health Research Institute in Bilbao, Spain. Our laboratory focuses on the potential of human stem cells and their derivatives for the study of diseases and the development of new therapeutic strategies.…
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…
