Haemophilia must be recognised within disability rights frameworks. Its barriers are fluctuating and episodic - a person may be fully able one day and unable to work or move normally the next due to a bleed or recovery. Those barriers create legal obligations on states and employers.
This is not about assigning identity. It is about when disability rights protections apply in law and practice.
Founded by Luke McLaughlin · World Haemophilia Day 2026
What we believe
Disability is not located in the body. It is created by a world that fails to accommodate people with impairments. Haemophilia is an impairment. The barriers people with haemophilia face in work, education, healthcare and daily life are the disability - and they can be removed.
The disability movement has secured legislative change across dozens of countries by organising collectively. People with haemophilia belong in that movement. Its tools - legal frameworks, political infrastructure, collective identity - are ours to use.
It was a series of decisions made by people in authority who prioritised cost and convenience over the lives of people with haemophilia. Those decisions were then covered up. That is not language we will soften.
Not patients to be managed. Not cases to be optimised. Rights-holders. Under the UN Convention on the Rights of Persons with Disabilities - ratified by 191 states - people with haemophilia have enforceable rights. We are here to enforce them.
People with haemophilia must have genuine choice and autonomy over decisions in their own lives - including treatment decisions, care plans, and how they navigate the systems that affect them. That means informed consent, not managed compliance.
We are not a charity. We accept no donations.
No pharmaceutical associations. No funding that shapes our positions. Fully independent.
Why haemophilia must be recognised within disability rights frameworks, what fluctuating barriers cost people, and why the legal frame matters.
Read the case →Over 3,000 people killed by contaminated NHS blood products. Decisions were made. Documents were destroyed.
Read the record →What people with haemophilia are entitled to under the CRPD. What states are obligated to do.
Know your rights →Mission Statement
“The framing of haemophilia as a purely medical condition is not neutral. It is political. And it has consequences.”Read our mission statement
Substack23 April 2026
A community poll of 170 people found 88% say haemophilia is a disability - and the legal picture across Kazakhstan, Hungary, and the UK shows why that recognition still isn't guaranteed.
(opens in new tab)ENIL Youth17 April 2026
Why haemophilia is a disability rights issue governed by binding legal obligations - not clinical and institutional discretion. Published on World Haemophilia Day.
Haemostasis Today2025–2026
Haemostasis Today covers HRP's advocacy work and rights-based approach to haemophilia - collected coverage of Luke McLaughlin's contributions.
(opens in new tab)New articles, campaign updates, and actions you can take. No ads. No pharma. Just advocacy.