International Albinism Awareness Day

“Still Standing Strong” is the theme for this year’s International Albinism Awareness Day on the 13th of June. This is a call to recognize, celebrate and stand in solidarity with persons with albinism around the world, and to support their cause – from their accomplishments and positive practices to the promotion and protection of their human rights.

People with albinism face discrimination worldwide. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion. This leads to various forms of stigma and discrimination.

Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair, and/or eyes. The two main types of albinism are oculocutaneous albinism (OCA) – the most common type, affecting the skin, hair, and eyes, and ocular albinism (OA) – a rarer type that mainly affects the eyes.

Persecution of people with albinism is based on the belief that certain body parts of albinistic people can transmit magical powers. As a result, people with albinism have been persecuted, killed, and dismembered and graves dug up and desecrated. Misconceptions of albinism persist, putting both adults and children at risk of abductions and killings. Since 2010, there have been around 700 reported cases of attacks and killings of persons with albinism in 28 countries in Sub-Saharan Africa – and these crimes are still taking place every day. The European Union continues to call for the effective investigation of crimes against people with albinism and fair trials.

For albinos, discrimination is not their only concern. Albinism remains a grave public health issue and the World Health Organisation has recognised it as a significant health problem in sub-Saharan Africa that requires lifelong management.

The risk, for example, of people with albinism in Africa developing skin cancer, is 1000 times higher compared with the general population. The natural sun protection factor (SPF) of someone with dark skin is 13. For those with fair skin, their natural protection factor is only three. Chronic sun exposure is therefore particularly detrimental – a difficult challenge given that daily temperatures in Africa exceed 35°C in summer.

Persons with albinism are also being denied equal access to health care, social protection, education, and employment in some countries, directly hindering their fundamental human right to participate and contribute in all aspects of life and society. This is why we strongly advocate for the implementation of laws that guarantee the protection of people with albinism and their full inclusion in social, economic, and political life, and that prohibit, prevent and bring redress for the discrimination they suffer from.

Persons with albinism have faced, and continue to face, ongoing hurdles and challenges that seriously undermine their enjoyment of human rights. From stigma and discrimination to barriers in health, education, and invisibility in social and political arenas. In addition, in several countries, they are subject to heinous attacks and killings. Despite all these challenges, persons with albinism remain positive and are still standing strong. A call for solidarity!