Albinism is a group of inherited genetic disorders which occurs worldwide, regardless of ethnicity or gender, and that affects melanin production in the hair, skin and eyes. Prevalence varies globally, ranging from approximately 1 in 20,000 individuals in Europe and North America, to as high as 1 in 5000 in parts of Sub-Saharan Africa [1,2].
People with albinism experience a combination of challenges, including lifelong visual impairment, increased risk of skin malignancies and social stigma and discrimination. Together, these factors can significantly impact quality of life, access to education and opportunities for social and economic participation [3,4].
People with albinism may suffer stigma, intersecting discrimination and even killings. Due to the medical and social challenges faced by people with albinism, global initiatives and organisations have been established to raise awareness and protect their rights. A key example is the mandate of the United Nations (UN) Independent Expert on the human rights of persons with albinism, tasked with monitoring abuses, advising on policy and promoting strategies to prevent violence and discrimination. In regions like Sub-Saharan Africa, the situation is particularly dire, with individuals often targeted due to harmful myths rooted in superstition and witchcraft. In response, the UN Human Rights Council adopted its first resolution on the issue in 2013, leading to ongoing efforts by the UN, Non-governmental organisations (NGOs) and the African Union to dispel these myths and protect the rights of people with albinism.
Celebrating United Nations International Albinism Awareness Day
In 2014, the UN General Assembly declared June 13th as International Albinism Awareness Day (IAAD) [5]. This annual observance provides a vital opportunity to amplify the voices of people with albinism worldwide. International Albinism Awareness Day celebrations are hosted by leading volunteer and community sector groups worldwide, including the National Organisation of Albinism and Hypopigmentation (NOAH) in North America, and the African Albinism Network. In contrast, the UK has had little history of such celebrations.
This year, the University Hospitals of Leicester NHS Trust hosted the first annual IAAD event in a UK hospital, in partnership with the Ulverscroft Eye Unit researchers and albinism advocate Michael Reeve, leader of the Disability Advocacy and Voice Network (DAV) at Leicester Royal Infirmary. Our event featured a stall in the hospital’s atrium, allowing staff and the public to engage in health discussions about impact of albinism and to dispel myths. We also showcased the groundbreaking albinism research in Leicester by holding the Leicester Ocular Imaging Conference in the afternoon, aimed at an academic audience.
The stall saw great engagement, particularly with the #IAAD selfie frames. Visitors expressed surprise, with comments like, “I’d never heard of albinism” and “I didn’t realise albinism affects eyesight.” This inaugural event laid the foundation for future annual celebrations of albinism awareness, in collaboration with the University of Leicester’s Ulverscroft Eye Unit and University Hospitals of Leicester NHS Trust. The event was well received and helped raise awareness of the clinical and social challenges faced by people with albinism. Overall, the event was a success, and we plan to expand it next year.
Advocating to prevent skin cancer-related mortality in people with albinism
The theme for IAAD 2025, ‘Demanding our rights: Protect our skin, Preserve our lives’, emphasises the need for skin cancer prevention in people with albinism. This theme highlights the importance of access to effective sun protection, regular skin screening and public education to reduce the prevalence of preventable skin cancers, a leading cause of early mortality among people with albinism in some regions [6]. Notably, a joint initiative by the UN and various albinism advocacy organisations has sought to add sunscreen to the World Health Organisation’s Essential Medicines List, aiming to improve global access to sun protection and thereby reduce preventable skin cancer deaths among people with albinism.
What clinicians need to know
Managing albinism involves a multidisciplinary, holistic approach involving ophthalmology, dermatology, genetic counselling and psychological support. While not exhaustive, this section aims to present an overview of the impact of albinism and outline the involvement of various health and care teams. Lack of melanin, as in albinism, varies in severity depending on the causative genetic mutation but commonly leads to both ophthalmological and dermatological consequences. In addition to the dermatological and ophthalmological consequences of albinism, syndromic forms, such as Hermansky-Pudlak and Chediak-Higashi syndrome, are associated with additional systemic manifestations, including haematological and immunological complications.
Impact on vision
In the eye, melanin supports normal eye development. A lack of melanin leads to abnormal ocular development, including foveal hypoplasia and optic nerve misrouting. Patients often experience photophobia, have nystagmus, strabismus, refractive problems and reduced visual acuity or blindness [7]. Early recognition is vital in minimising the impact that visual impairment has on day-to-day activities, employment and education. Refractive lenses can help with low vision, while sunglasses and hats may help with photophobia. It is also important that adaptations are made at school, such as high-contrast reading material and large text, to reduce the risk of educational delays due to poor vision. In certain cases of strabismus, referral for eye surgery may be warranted.
Sun protection and risk of skin cancer
Due to the photo-protective role of melanin in the skin, individuals with albinism face an increased risk of developing skin cancers such as malignant melanoma and squamous cell carcinoma, both of which are significant causes of mortality for people with albinism and are set to become a bigger issue with the growing impact of climate change [8]. As such, early diagnosis, surveillance, education and access to treatment are of the utmost importance.
Lifelong sun protection is essential to reduce the risk of skin cancer and is often combined with protective clothing. Education may be provided on routine self-examination for skin lesions and on surveillance for early detection of skin cancer.
Systemic effects of syndromic forms of albinism
Additionally, awareness is needed of systemic complications that can occur in syndromic albinism, such as bleeding problems seen in Hermansky-Pudlak Syndrome.
Genetic counselling
As albinism is largely inherited in an autosomal recessive or X-linked pattern, genetic counselling allows patients to understand the risk of their children having the condition and the specific type of albinism that they have. This allows patients and genetic counsellors to have open conversations about the diagnosis and for patients to feel empowered to make decisions regarding family planning.
Psychological support
In addition, psychological support is also vital for the breadth of impact on psychological wellbeing and quality of life, including low mood or challenges with identity that may stem from social exclusion.
Conclusion
As we have explored, albinism is a complex condition which deserves global attention. We encourage other hospitals and healthcare institutions to consider hosting IAAD events in the future. By participating, hospitals can help raise awareness, dispel myths about albinism and showcase ongoing research in the field. Together, we can build a broader platform for albinism education and engagement in the UK healthcare sector.
References
1. Albinism: myths and reality. Lancet Child Adolesc Health 2019;3(8):511.
2. Kromberg JGR. Chapter 3: Epidemiology of Albinism. In: Kromberg J, Manga P (Eds.). Albinism in Africa. Academic Press; 2018:57–79.
3. Chu B, Maranga A, Mosojane KI, et al. Sociodemographic features of a cohort of people living with albinism in Botswana. JAAD Int 2021;2:153–63.
4. Maunganidze F, Machiha K, Mapuranga M. Employment barriers and opportunities faced by people with albinism. A case of youths with albinism in Harare, Zimbabwe. Cogent Social Sci 2022;8(1).
5. www.un.org/en/observances/albinism-day
6. Nakkazi, E. People with albinism in Africa: contending with skin cancer. Lancet 2019;394(10198):553–4.
7. Thomas MG, Zippin J, Brooks BP. Oculocutaneous Albinism and Ocular Albinism Overview. In: Adam MP, Feldman J, Mirzaa GM, et al. (Eds.) GeneReviews® (Online). Seattle, University of Washington; 1993–2025:
www.ncbi.nlm.nih.gov/books/NBK590568
8. Astle B, Buyco M, Ero I, Reimer-Kirkham S. Global impact of climate change on persons with albinism: A human rights issue. J Clim Chang Health 2023;9:100190.
[All links accessed May 2026]
Declaration of competing interests: None declared.
