twins with albinism

ALINC: Inclusion for children with albinism

The Liliane Foundation and Human Rights Watch designed a project to protect and improve the lives of children with albinism in Tanzania. This ALbinism INClusion (ALINC) Programme focuses on advocacy and awareness raising. A broad coalition of organizations is involved, including those of people with albinism and local government representatives. The project started mid-2017 and is funded by the Dutch National Postcode Lottery.

Facts and myths on albinism

Albinism is a genetic disorder characterized by the complete or partial absence of the pigment melanin in the skin, hair and eyes. While in Europe the rate of people with albinism is approximately 1 in 20,000, in certain parts of Africa the rate may be 1 in 5,000.

Many people with albinism suffer from ignorance about their condition, serious discrimination and stigma. In Tanzania people with albinism are being chased and killed, dismembered or otherwise violated. The mistaken belief is that body parts, if used as ingredients in rituals and potions, will bring prosperity to the user.

Advocacy and awareness raising

The number of attacks has decreased considerably recently. Also, teachers in particular are more aware of the effects of albinism than before. However, much remains to be done in terms of safety and awareness raising. The Liliane Foundation and its ALINC partners are undertaking the following activities:

  • Research, to indicate the real number of people with albinism and the magnitude of the problems they may encounter.
  • A baseline survey, to be able to demonstrate that people in general have a less negative perception of people with albinism.
  • Distribution of printed and digital materials to increase awareness and knowledge about the condition.
  • Encounters with local government officials to ensure the inclusion of people with albinism in local social activities such as schooling.
  • Identification, referral and treatment of people with albinism by skin cancer clinics and specialists, and awareness raising of preventive measures.
  • Outreach to parents of children with albinism, teachers and others on how to protect these children against the negative consequences of albinism.
  • Awareness raising among police and other legal people to stop impunity for those that have harassed people with albinism.
  • Events where people with albinism present themselves as persons with the same dreams, rights and ambitions like everybody else.