Luke McLaughlin: Every Voice Counts in the Global Hemophilia Community
Luke McLaughlin, Founder of The Haemophilia Rights Project, shared The Haemophilia Rights Project‘s post on LinkedIn, adding:
“Read my latest article for The Haemophilia Rights Project.
I welcome the World Federation of Hemophilia, Fédération mondiale de l’hémophilie upcoming World Hemophilia Day 2027 theme, ‘Every voice counts’.
It is an important message and a valuable opportunity to reflect on whose voices are heard in the global haemophilia community and whose experiences remain overlooked.
In this article, I explore the importance of listening to critical voices, recognising underrepresented communities and challenging the professionalisation of advocacy, which can leave people without institutional positions or professional credentials struggling to have their experiences recognised as expertise.
This includes younger people, women and girls with bleeding disorders, people in lower income countries, those outside established advocacy networks and victims and survivors of the global infected blood scandal.
Drawing on the disability rights principle ‘Nothing about us without us’, I argue that this is an opportunity for the global haemophilia community to move beyond symbolic consultation towards meaningful participation, influence and shared decision making.
Every voice should count, not just those with the titles, credentials or connections to be heard.”
The Haemophilia Rights Project shared a post on LinkedIn:
“Every voice counts‘ is a welcome theme for World Hemophilia Day 2027, but what does it mean in practice?
Being invited to share your story is one thing.
Having the power to influence decisions about your treatment, healthcare and future is another.
In this article, I challenge the global haemophilia community to take the principle of ‘Nothing about us without us’ seriously.
Rooted in the disability rights movement and central to the Haemophilia Rights Project, it should shape how our community approaches representation, lived experience, accountability and decision making.
Every voice should count throughout the year, not just on 17 April.”
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