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Activists push for Pakistan to recognise and support people with albinism

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Briefings

Pakistan lacks national data on albinism, leaving unmet needs in education, healthcare, and employment. A 2021 study by Sajid et al. documented genetic causes in Pakistani populations, while a 2026 UN visit highlighted systemic barriers. Adeel Nasir, a 24-year-old with albinism in Pakistan, received disability certification based on vision impairment rather than albinism itself, illustrating how institutional recognition is missing. The absence of official statistics means many families remain invisible to policymakers and institutions.

Key points

• Pakistan has no separate national estimate of albinism prevalence, with available estimates ranging from one in 17,000 to 20,000 people in many European and North American populations.
• Adeel Nasir, a 24-year-old with albinism in Pakistan, received a disability certificate based on weak eyesight rather than albinism itself, highlighting the lack of separate recognition categories in government institutions.

Context

This briefing summarizes findings from a 2021 study by Sajid et al. on genetic causes of oculocutaneous albinism in Pakistani populations, alongside a 2026 UN Independent Expert report on human rights. The evidence indicates that while albinism is a rare, non-contagious genetic condition, Pakistan lacks data systems to identify and support affected individuals, leading to unmet needs in education, healthcare, and employment.

Limitations

Pakistan's 2023 Population and Housing Census did not collect separate data on albinism, as collecting information on rare conditions requires well-designed questionnaires. The absence of national estimates means many families remain invisible to policymakers, and the study of 94 families could not establish how many people with albinism live in the country due to the inability to link genetic variants to population counts.

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