My Experience at the 2025 OIFE Conference in Oslo
The Osteogenesis Imperfecta Federation Europe (OIFE) Conference took place from the 5th to the 8th of June 2025 in Oslo, Norway. Organised by OIFE, the event brought together national OI organisations, including the Brittle Bone Society and OIFE delegates. It united individuals, families, medical professionals, and advocates from across Europe. I attended with the aim of learning more about the work being done by various OI organisations, engaging in discussions on mental health and stigma, connecting with others in the rare disease community, and representing lived experiences of Osteogenesis Imperfecta.
The conference also served as OIFE’s Annual General Meeting (AGM), providing a meaningful platform to share insights, address challenges, and foster collective learning. Alongside informative sessions and updates on medical developments, the event offered space for community bonding, informal conversations, and the building of friendships across borders.
“We are few. We are many.” This powerful phrase, which I first encountered through the Rare Diseases International Youth Leadership Programme, echoed in my mind throughout the weekend. It captured the essence of the event and the strength of the community gathered in Oslo.
The panel discussions were particularly insightful, covering a broad range of topics—from medical advisory board updates and emerging treatments to the deeply important conversations around mental health and stigma. A personal highlight for me was the mental health panel—a subject I frequently speak about and had recently addressed at the 78th World Health Assembly in Geneva. It was incredibly validating to see this topic receive the attention it deserves within the OI community.
The event also prompted personal reflection, taking me back to my childhood experiences of living with OI in Germany. It reminded me how far our community has come in raising awareness, building support systems, and advocating for change. The sense of belonging I felt during the conference was profound, and I left feeling re-energised and inspired by the strength, resilience, and unity of everyone I met.
Beyond the sessions, I was grateful for the opportunity to connect with others in the rare disease space—forming new friendships and professional connections that I hope will lead to future collaboration. Representing the Brittle Bone Society on a platform like OIFE was both a proud and humbling experience.
Attending the OIFE Conference in Oslo was not only a valuable learning experience but also a significant personal milestone. I’m deeply grateful to the Brittle Bone Society, Patricia Osborne CEO, and Coreen, Support Development Officer for the invitation and their continued support. I look forward to continuing my advocacy around mental health in the rare disease community and to contributing to future conversations at both national and international levels.
