Bruno Lacombe: Experiencing a “A Life in a Day” with Hemophilia in Japan
Bruno Lacombe, Vice President of Rare Disease Business Unit at Novo Nordisk, shared on LinkedIn:
”There is no better reminder of why we do what we do than hearing directly from patients themselves.
As part of World Haemophilia Day, we hosted a disease awareness event this weekend where people living with haemophilia and medical expert came together to share perspectives on treatment choices – and what truly matters in everyday life.
While innovation in haemophilia care has progressed significantly, patients reminded us that daily life is still shaped by uncertainty: the constant need to be prepared for unexpected bleeding, the impact of joint disease on work and mobility, and the emotional burden that often remains unseen.
Hearing directly from patients reinforced a powerful message: progress is not defined by treatment alone, but by how meaningfully it improves daily life.
Earlier this year, I and other colleagues from our Rare Disease organization in Japan took part in the ‘A Life in a Day’ experience, helping us better understand what a single day living with haemophilia can feel like.
Every rare disease comes with different challenges.
My son was diagnosed with Noonan syndrome, and I learned how to deal with it.
Through the ‘A Life in a Day’ project I experienced the challenges of dealing with hemophilia.
While having patients with hemophilia at our office today I witnessed their challenges and realized that even small stairs can represent a challenge for them.
These experiences must continue to remind us why keeping patients at the center of everything we do truly matters.
World Haemophilia Day is more than a moment of awareness.
It is a moment to ask ourselves:
How does my work make a difference at a specific moment in the lives of patients and their families?
Now is the time to act – Together, we will continue building a better future for people living with haemophilia and rare diseases.”
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