Standing Voice (SV) is an international NGO formally established in 2013 to promote the social inclusion of people in Africa who have the genetically inherited condition albinism. Though SV’s Charity Commission Registration was completed in 2013, our team members have decades of experience working with this vulnerable population.
Albinism is a rare, non-contagious, recessive genetic condition that limits the body’s ability to process melanin, reducing or eliminating pigmentation in the skin, eyes and hair. Albinism occurs if both parents carry the recessive albinism gene, in which case the probability of having a baby with the condition is 1 in 4 (25%). This probability is the same in each pregnancy and bears no relation to other births. Globally 1 person in 18,000 has albinism. Oculocutaneous albinism type II (OCA2) is the most common type in Sub-Saharan Africa, where the condition has a higher prevalence: 1 in 1,400 are affected in parts of Tanzania, a frequency more than tenfold the global rate.
In Sub-Saharan Africa, many people with albinism are stigmatised because of their pale appearance; dehumanising myths and superstitions surround the condition, with misconceptions leading to mockery, abandonment and violence. Albinism is often understood to be a curse, or contagious. Some believe persons with albinism are not human and do not die but are demons who disappear. The bodies of people with albinism are frequently said to possess magical properties, able to cure disease or deliver fortune; sex with a woman with albinism is thought to cure AIDS. Albinism is frequently viewed as the exclusive ‘fault’ of the mother, a misconception that tears apart families and leaves mothers ostracised and abused. Often seen as ghosts or ‘zeru zeru’ (‘sub-human’ in Swahili), people with albinism are frequently segregated by their families and communities. This social ostracisation intersects with the much-heightened vulnerability of this group to skin cancer and vision impairment resulting from the melanin deficiency associated with the condition.
SV works holistically across Health, Education, Advocacy, and Community Programmes to facilitate in-country responses to the primary challenges facing people with albinism, informed by evidence-based participatory research. Currently our focus is primarily in Tanzania and Malawi, with a vision to expand to other Sub-Saharan African countries at the request of civil society and government in new implementation locations. Broadly, our approach is one of pioneering collaboration based on implementation plans created - and initially coordinated - by our local team and a network of local and international experts who are engaged to build scalable interventions which are geared towards local leadership. This approach has invited support from key partners including the UN Independent Expert on Albinism. SV is a member of a select task-force defining the Regional Action Plan on Albinism in Africa, an implementation plan for leaders in Africa which has been endorsed by The African Commission on Human and Peoples' Rights and the Pan-African Parliament.
We are a small team with registered offices in London (UK), Mwanza (Tanzania) and Lilongwe (Malawi). Our teams in Tanzania and Malawi focus on project implementation and developing our strategic regional relationships. Our UK team members cover project management, communications and media, fundraising, strategy development, financial management, and executive management of all operations. SV is a relatively young charity that has a well-established reputation across Africa for fast-moving projects which result in meaningful change and progress for the multiple stakeholders with whom we work and engage.