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Legal Rights

Haemophilia is covered by international disability law.

The question is not whether the legal framework exists. It does. The question is why it is not being applied.

The UN Convention on the Rights of Persons with Disabilities

The CRPD was adopted by the United Nations in 2006 and has been ratified by 191 states — making it the most widely ratified UN human rights treaty in history. It is legally binding on all states that have ratified it.

Article 1 — Core Definition

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Long-term physical impairment

Haemophilia is a lifelong condition. It is not temporary.

Interaction with barriers

People with haemophilia face barriers in employment, education, and daily life created by societal failure, not the condition itself.

Hindered participation on equal basis

Survey data consistently shows reduced workforce participation and social inclusion compared to the general population.

The key articles — and how they apply

Each of these articles creates binding obligations on states that have ratified the CRPD. None of them are optional.

Article 1

Definition and Purpose

The CRPD covers persons with long-term physical impairments which interact with barriers to hinder their full participation in society. People with haemophilia meet this definition. Haemophilia is a lifelong physical impairment. The barriers people with haemophilia face in work, education, and daily life are created by society's failure to accommodate them — not by the condition itself.

Article 5

Equality and Non-Discrimination

States must prohibit all discrimination on the basis of disability and guarantee equal and effective legal protection. This means people with haemophilia cannot lawfully be refused employment, denied insurance, or excluded from services on the basis of their condition. States must also provide reasonable accommodation — and failure to do so is a form of discrimination.

Article 8

Awareness-Raising

States must promote awareness of the capabilities and rights of disabled people, including through education systems and media. For people with haemophilia, this means governments have an obligation to counter the widespread misunderstanding that haemophilia is purely a medical matter — including within clinical and institutional settings.

Article 9

Accessibility

States must ensure disabled people have equal access to the physical environment, transportation, information, communications, and services. For people with haemophilia, this includes accessible treatment centres, accessible workplaces, and the right to request adjustments to participation in public and professional life.

Article 19

Living Independently and Being Included in the Community

States must ensure disabled people can choose where and how they live, have access to in-home and community support, and are not isolated. For people with haemophilia, this means access to community-based care, peer support structures, and the ability to participate in professional and civic life without having to choose between treatment and employment.

Article 24

Education

States must ensure disabled people have access to inclusive education at all levels. Children with haemophilia are entitled to support plans, trained staff, and accessible school environments. They cannot be excluded from activities without alternatives. The transition from paediatric to adult care must be managed with continuity.

Article 25

Health

States must ensure disabled people have access to health services on an equal basis, including free or affordable healthcare and services designed to minimise further impairment. For people with haemophilia, this means equitable access to treatment regardless of geography, and the integration of psychological support as a standard component of care.

Article 26

Habilitation and Rehabilitation

States must support disabled people to achieve maximum independence through habilitation and rehabilitation services. For people with haemophilia — particularly those with joint damage from early bleeds or inadequate treatment — this means access to physiotherapy, pain management, and adaptive support as rights, not discretionary services.

Article 27

Work and Employment

States must ensure disabled people have equal access to employment, including through reasonable adjustments, prohibition of discrimination in hiring and retention, and support for self-employment. Employers are legally obligated to accommodate people with haemophilia. Flexible scheduling for treatment, remote work options, and adjusted physical requirements are all forms of reasonable adjustment.

Why isn't the disability label being applied?

The medical model of haemophilia is commercially and institutionally convenient. Pharmaceutical companies benefit from framing haemophilia as a condition to be treated — not a disability to be accommodated. Treatment is a market. Rights are not.

National health systems also benefit. Disability recognition creates legal obligations — to make reasonable adjustments, to fund support, to remove barriers. Keeping haemophilia in the medical frame avoids those obligations.

The result is a community told that its problems are clinical, and that better drugs are the answer. The Haemophilia Rights Project exists to challenge that framing.

European Network on Independent Living (ENIL)

HRP is connected with ENIL, which has published work on haemophilia and disability rights. Their article — “Haemophilia Rights: The Half a Million Euro Question” — sets out the economic and legal case.

Read the ENIL article →

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