On September 12, 2025 OIFE has been represented by Alessandra Tolaccia at the symposium organized by the European Registries for Rare Endocrine and Bone Conditions. Good opportunities to learn what is going on in the world of registries and to network with leading OI- and rare bone experts.
From May 11-14, 2024, Taco van Welzenis represented OIFE at the European Congress of Endocrinology (ECE) 2024 in Stockholm including the annual meeting of the Patient Advocacy groups (PAG). OIFE became an affiliated PAG member of the European Society on Endocrinology (ESE) in 2024. You can get more info about the conference by visiting this…
New PhD in OI – Extra skeletal complications in OI Interview with Silvia Storoni Who are you & what is your relationship to OI? I am Silvia Storoni, a physician specializing in internal medicine with a particular interest in endocrinology. A few years ago, I came in contact with Dr. Marelise Eekhoff and Dr. Dimitra…
The OIFE has recently been accepted as a Patient Advocacy Group (PAG) affiliated member of the European Society of Endocrinology (ESE). ESE see this as a two-way partnership, since PAGs play an essential role in ensuring that patients throughout Europe have access to the best information about their condition as well as to diagnosis and…
The European Registry for Rare Bone and Mineral Conditions (EuRR-Bone) needs input from people with OI and other rare bone conditions to finalize their questionnaires directed towards patients. What are the most relevant aspects for people with OI? Which topics can be disregarded? There is also a separate survey asking for input from professionals who…
Interview with Jane Dahl Andersen, MD with specialty in Endocrinology and Internal Medicine at Lillebælt Hospital, Denmark My name is Jane, I am a MD with specialty in Endocrinology and Internal medicine. My specific interest is in bone and calcium metabolism, in particular the rare disease OI. In the Bente Langdahl group at Aarhus University…
