About
The Haemophilia Rights Project
What we do
The Haemophilia Rights Project applies the social model of disability to haemophilia. We make the case - through community data, international law, and political argument - that people with haemophilia are disabled people with enforceable rights under the UN CRPD.
We publish. We campaign. We build the record of the community's experience that makes the rights argument concrete.
We are not a charity and accept no donations. We have no pharmaceutical associations, no pharmaceutical funding, and we never accept conditional funding of any kind.
Our positions are shaped by the community and by international law - not by funders.
Independence
The Haemophilia Rights Project is fully independent. We take no money from pharmaceutical companies or healthcare organisations. We do not accept donations.
We never accept conditional funding. Any funding must not interfere with our independence or our positions. That applies to all sources - including grants from governments or public bodies.
Independence is not a policy choice. It is a structural requirement. The organisations that have historically shaped the haemophilia narrative - pharmaceutical companies, clinical systems, national patient organisations funded by industry - have interests that do not always align with rights-based advocacy. We have no such constraints.
Founder
Luke McLaughlin
I am from Derry, Northern Ireland, and I have severe Haemophilia A. I am an independent disability rights advocate who has experienced significant barriers throughout my life.
I founded The Haemophilia Rights Project on World Haemophilia Day 2026 because I believe haemophilia belongs firmly within the disability rights movement - and that the community deserves an organisation that is fully independent, grounded in the social model of disability, and willing to make arguments others have avoided.
My uncle, Seamus Conway, died in 2018, aged 45, as a result of contaminated NHS blood products. He was one of thousands. His death, and the institutional failures behind it, are part of why this work matters to me personally.
I believe treatment and rights must be achieved together. The Haemophilia Rights Project exists to serve as an independent community resource - one that is accountable to people with haemophilia, not to the systems that have historically shaped our care.
Press and contact
For press enquiries, collaboration proposals, academic interest, or to get in touch directly:
contact@haemophiliarightsproject.orgConnections and published work
European Network on Independent Living (ENIL)
HRP is connected with ENIL and has contributed to their work on haemophilia and disability rights.
Read the ENIL article →Substack
Published articles on haemophilia rights, the social model, and the infected blood scandal.
Read on Substack →Where it's going
The next step is establishing HRP as a formal organisation producing qualitative reports on the barriers people with haemophilia face - grounded in community evidence and rights-based frameworks.
The community record being built now - through voice submissions and published advocacy - is the foundation that makes that work possible.
Add your voice →