ENIL Youth17 April 2026
Haemophilia Rights: The Half a Million Euro Question
Why haemophilia is a disability rights issue governed by binding legal obligations — not clinical and institutional discretion. Published on World Haemophilia Day.
The Haemophilia Rights Project
A rights-based advocacy project applying the social model of disability to haemophilia. People with haemophilia are disabled people. Their rights are not optional.
What we believe
The positions that shape everything we do.
1.
The Social Model of Disability
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.
2.
Solidarity with the broader disability rights movement
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.
3.
The infected blood scandal was not a tragedy. It was a decision.
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.
4.
People with haemophilia are rights-holders.
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.
5.
Patient choice and autonomy
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.
Where to start
The Argument
Why haemophilia is a disability under the social model, what barriers cost people, and why the rights frame matters.
Read the case →The Scandal
Over 3,000 people killed by contaminated NHS blood products. Decisions were made. Documents were destroyed.
Read the record →Your Rights
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
Latest articles
All articles →Stay updated
New articles, campaign updates, and actions you can take.