From May 5 to May 8, 2022 the youth weekend will take place in Bruges, Belgium. Registration is open now and will close February 1st: https://forms.gle/tGH2ZeMkPyPVc8o89 Don’t hesitate to contact the organizers on youth@zoi.be if you have questions!
Interview with Ida Vandsøe Madsen, student at the Department of Anthropology at University of Copenhagen, Denmark Ida Vandsøe Madsen is a Ph.D.-student at the Department of Anthropology at the University of Copenhagen. Anthropology is the study of human biological and physiological characteristics and their evolution. She did her Master’s Thesis (final project) on OI as…
The Osteogenesis Imperfecta Foundation (OIF) awards Michael Geisman Fellowship grants to post-doctoral trainees who are currently working on projects with clear relevance to OI, or who have projects that will enable them to develop expertise in OI research. Investigators from other countries than the USA, can also apply. The application cycle is now open and…
Today OIFE was represented at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field and to provide input to EURORDIS…
Claudia Finis is a member of the German OI-association DOIG and a volunteer for the OIFE. With the input from two other parents (Janina and Sven) who have OI themselves, she wrote an article about parenting a child when you have OI. The article was first published in the German magazine “Durchbruch” (Breakthrough). It has…
Interview with Rebecca Tvedt Skarberg, member of European Patient Advocacy Group (ePAG) The European Reference Networks (ERNs) are 24 virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on rare diseases that require highly specialised treatment. One of these networks is the European Reference Network for Rare Bone Diseases (ERN-BOND). ERN-BOND has…
A retrospective study of medical and insurance records from the USA indicates that health care costs for people with a rare condition have been underestimated and are three to five times greater than the costs for people without a rare condition. Why are we not surprised? Finding out more about direct and indirect costs related…
Today Ingunn Westerheim from OIFE represented the rare disease patient organizations at a panel debate called the Patient Bio-Forum, organized by the company EuropaBio. This edition of the forum focused on the challenges and opportunities of the 24 European Reference Networks (ERNs), which includes “our own network” the ERN BOND – European Reference Network on…
In Sweden, the Karolinska Institutet and the Karolinska University Hospital are leading the academic clinical trial BOOSTB4 where we are looking for subjects who have a diagnosis of OI Type III or severe Type IV with a specific collagen mutation. The aim of the clinical trial is to study the safety and efficacy of the…
