At the OIFE 2025 conference we had the pleasure of having Matt Bolz-Johnson from EURORDIS present as a speaker. And honestly we could not ask for a better contributor at our 2025 conference in Oslo! Matt Bolz-Johnson reminded us about the importance of including mental health in our advocacy for better care and services. He also gave a great and entertaining introduction to the somewhat dry topic of health technology assessment (HTA) on a Sunday morning! Eurovision style!

With permission from Matt himself, we give you his experiences from the conference below.

Quality of Life: The Missing Piece in Rare Disease Care

“I have had the privilege to have attended and taken part in the OIFE conference in Oslo last weekend. I have been connected to the community over the past decade but through the ERNs. This was the first time I had the opportunity to enjoy quality time with the OI community and what an absolute gift of an experience! Words fail me to convey how enriching and inspiring it was to get to handout with these guys. I wanted to share some of my insights from leading a session on the importance of quality of life and mental wellbeing in OI.

Living with Osteogenesis Imperfecta (OI) isn’t just about managing fragile bones. It’s about navigating a life shaped by chronic pain, invisible fatigue, emotional stress, and the fear of an uncertain future. Pain and is typically put down to bone pain but the impact of pain is far more far reaching from neurological pain, and the word ‘fatigue’ falls short of conveying its reality…

At the OIFE Conference, one truth became clear:
Quality of Life is not a ‘nice-to-have’, a ‘bonus’ if your lucky nor a privilege to be earned, but is the very fabric of our lives, it is a human right and the starting point for a just society.

People with OI spoke openly about:
💡 Living with mental strain, from post-traumatic stress around surgeries to the “empty battery” fatigue that isn’t resolved by rest
💡 The invisible burden of daily tasks: getting dressed, attending appointments, and managing pain while trying to work or parent
💡 Aging with OI, and the shared anxiety over who will care for whom as families grow older
💡 A sense of “chronic grieving” for what’s been lost, and what may never be possible

Meanwhile, systemic gaps persist:
🔹 Quality of life rarely features in treatment plans
🔹 Mental health support is often absent in both medical care and clinical trials
🔹 Assistive services (like travel or daily help) are patchy, underfunded, and sometimes dangerous
🔹 Care stops abruptly at adulthood, even though needs grow more complex

We need to flip the script.

True innovation in rare disease care means:
✅ Valuing psychological wellbeing alongside physical outcomes
✅ Providing long-term support systems that evolve with people’s needs
✅ Measuring success by life satisfaction, not just lab results
✅ Making autonomy, dignity, and opportunity universal—not conditional

As someone at the session put it: “I want the same right to thrive, to succeed, to dream—without spending everything I have just to survive.”

Let’s make quality of life the north star for OI care—and for all rare disease communities.”

Matt Bolz-Johnson, EURORDIS