Standing Voice is a leading international organisation defending the rights of people with albinism in Sub-Saharan Africa. They accomplish this through innovating beneficiary-centred action that increases agency, welfare and access to rights. They have registered offices in the UK (London), Tanzania (Mwanza) and Malawi (Lilongwe).
Albinism is a recessive genetic condition that impairs the body’s production of melanin, reducing or eliminating pigmentation in the skin, eyes and hair. This melanin deficiency causes people with albinism to be visually impaired and, in hot climates, uniquely vulnerable to UV radiation and skin cancer. Markedly paler than their dark-skinned peers and families, people with albinism are a highly visible minority in African countries, where their condition remains poorly understood and highly stigmatised due to erroneous beliefs and myths. Many people with albinism are shut out of civil participation and unable to access the most basic opportunities and services, including healthcare, education, justice, housing and employment.
Individuals have also been targeted physically — since 2006, over 230 people with albinism have been killed, and over 800 attacked, across 30 African countries, which are just the reported figures. Working across Tanzania and Malawi, where the violence and discrimination have been most extreme, Standing Voice delivers programmes in health, education, welfare, advocacy and economic empowerment. They have established clinical networks to treat visual impairment and prevent skin cancer; relocated children with albinism from segregated camps to inclusive schools and universities; and supported hundreds of adults to recover from trauma and rebuild their lives through therapy, apprenticeships and training.
Above all, Standing Voice has worked to amplify the voices of people with albinism from grassroots community contexts all the way to the halls of the United Nations.