3 photos. One shows a young person with albinism in a crowd of darker skinned people. One shows two smiling children under an umbrella - one has albinism and the other has dark skin. the third photo is of three adult women, one of whom has albinism.
International Albinism Awareness Day seeks to amplify the voices and visibility of persons with albinism in all areas of life.
Photo:©OHCHR and ©UNICEF (middle)

Demanding our rights: Protect our skin, Preserve our lives

The 2025 theme highlights the urgent need to prevent skin cancer in persons with albinism through awareness, screenings, and sunscreen access.

The risk of skin cancer is extremely high for persons with albinism, and the lack of access to sunscreen, protective gear, as well as skin cancer screening and treatment can lead to foreseeable, yet preventable deaths. Skin cancer is the primary cause of death for persons with albinism in the Southern African region, rendering sunscreen an essential medicine, not a cosmetic product. 

The majority of national action plans on albinism adopted by governments include measures to ensure access to sunscreen, protective clothing and regular dermatological check-ups and skin cancer treatments.

Several countries have initiatives providing free or subsidized sunscreen and sun protective clothing, access to dermatological services and skin cancer screening, detection and treatment and awareness campaigns to educate persons with albinism and their families about the importance of sun protection. Studies published on the impact of such interventions have shown that these interventions, where implemented, have significantly improved the health outcomes of persons with albinism.

#iaad2025 #sunscreenisadrug #albinism

10th anniversary of the mandate

The year 2025 marks the tenth anniversary of the establishment of the mandate on the enjoyment of human rights by persons with albinism. In commemoration of this milestone, in her report the current mandate holder, Muluka-Anne Miti-Drummond, provides an overview of progress made in the implementation of rights of persons with albinism worldwide over the last decade. The Independent Expert also outlines persisting challenges and makes recommendations for the continued advancement of the rights of persons with albinism.

Report

What is albinism?

Albinism is a rare, non-contagious, genetically inherited difference present at birth. In almost all types of albinism, both parents must carry the gene for it to be passed on, even if they do not have albinism themselves. The condition is found in both sexes regardless of ethnicity and in all countries of the world. Albinism results in a lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light. As a result, almost all people with albinism are visually impaired and are prone to developing skin cancer. There is no cure for the absence of melanin that is central to albinism.

While numbers vary, it is estimated that in North America and Europe 1 in every 17,000 to 20,000 people have some form of albinism. The condition is much more prevalent in sub-Saharan Africa, with estimates of 1 in 1,400 people being affected in Tanzania  and prevalence as high as 1 in 1,000 reported for select populations in Zimbabwe and for other specific ethnic groups in Southern Africa.

Health challenges of people living with albinism

The lack of melanin means persons with albinism are highly vulnerable to developing skin cancer. In some countries, a majority of persons with albinism die from skin cancer between 30 and 40 years of age. Skin cancer is highly preventable when persons with albinism enjoy their right to health. This includes access to regular health checks, sunscreen, sunglasses and sun-protective clothing. In a significant number of countries, these life-saving means are unavailable or inaccessible to them. Consequently, in the realm of development measures, persons with albinism have been and are among those “left furthest behind.” Therefore, they ought to be targeted for human rights interventions in the manner envisioned by the Sustainable Development Goals.

Due to a lack of melanin in the skin and eyes, persons with albinism often have permanent visual impairment. They also face discrimination due to their skin colour; as such, they are often subject to multiple and intersecting discrimination on the grounds of both disability and colour.

 

Did you know?

  • Albinism is a genetic condition inherited from both parents that occurs worldwide, regardless of ethnicity or gender.
  • The common lack of melanin pigment in the hair, skin and eyes of people with albinism causes vulnerability to sun exposure, which can lead to skin cancer and severe visual impairment.
  • As many as 1 in 5,000 people in Sub-Saharan Africa and 1 in 20,000 people in Europe and North America have albinism.
  • In some countries people with albinism suffer discrimination, poverty, stigma, violence and even killings.
  • In some countries, women who give birth to children with albinism are repudiated by their husbands, and their children abandoned or the victims of infanticide.
  • The movie industry has seldom portrayed people with albinism accurately, preferring to depict them as villains, demons or freaks of nature.
  • Violence against people with albinism is largely met by social silence and indifference, and is seldom followed by investigations or the prosecution of perpetrators.

source: OHCHR

A young person with albinism looks to the side with a pained expression

“I received disturbing reports of attacks and abductions of persons with albinism, in two different countries, both of which had little or no known attacks against persons with albinism until the recent months,” said the Independent Expert on albinism, Muluka-Anne Miti-Drummond.

“One of the victims was a child whose body was reportedly thrown into a river after her eyes and organs had been removed, no doubt for ritual purposes.”

Read the full story

 

drawing of silhouettes of people in different colors, with white in between

The worst expression of discrimination against persons with albinism is their dehumanization, which lays the foundation for horrifying physical attacks against them. Because some believe that they are magical beings or ghosts, they mutilate or even kill them, so their body parts can be used for witchcraft rituals. Meet the Champions of the albinism cause, who are sharing their stories in an effort to dispel these dangerous myths. If you are a person living with albinism, you can share your own story.

 

an abstract illustration of people engaged in an event

International days and weeks are occasions to educate the public on issues of concern, to mobilize political will and resources to address global problems, and to celebrate and reinforce achievements of humanity. The existence of international days predates the establishment of the United Nations, but the UN has embraced them as a powerful advocacy tool. We also mark other UN observances.

 

Salif Keita, from Mali, is one of the most influential musicians on the African continent. Known as the “Golden Voice of Africa”, Mr. Keita was born with albinism. In 2005, he founded the Salif Keita Global Foundation to raise awareness of the condition. His award-winning album La Différence was dedicated to ending violations of the rights of persons with albinism across the world. http://albinism.ohchr.org/

Although there is a lot of research on the situation of human rights defenders (HRDs), there is little information about human rights defenders working on albinism. HRDs with albinism often face challenges including lack of resources and capacity, limited links with other human rights organisations, and threats to their right to life. In our latest animated video in collaboration with the Centre for Human Rights, we highlight these challenges, and how States can act to protect HRDs with albinism/working on albinism.

 

Connie Chiu was born in Hong Kong. The fourth child in a Chinese family, she is the only one born with albinism. Connie and her family moved to Sweden where she grew up studying arts and journalism. At the age of 24, she started her fashion modelling career by working with the French designer Jean-Paul Gaultier. Now, Connie juggles modelling with her singing career; as a jazz singer she is invited to perform at major events, jazz clubs. See more videos of people living with albinism.