• of Rick Guidotti with the main goal to challenge stigma, fear and discrimination and support positive social change in relation to albinism in Kenya and later to other African countries. Source of the Nile Union of Persons with Albinism (SNUPA) is a non-profit organization based in Jinja Uganda. it was formed by Persons living and those affected by albinism to advocate for access to quality services for this group. Contact: info@actiononalbinism.org Introduction: The African Albinism Alliance and its allies appreciate the opportunity to provide the information below to OHCHR during the drafting of its report on statistics and data collection on persons with disabilities. This, submission will provide information on the situation in Kenya, Malawi, Namibia, Nigeria and Uganda. Whilst the submission endeavours to provide some general information on disability data and statistics in the countries that the submitting organisations work the submissions primarily focus on data collection and statistics as it pertains to persons with albinism. The rationale for the focus on persons with albinism is that persons with albinism as a group are oftentimes not properly accounted for in disability statistics and data collection. Of particular concern is that the Washington Group Short Set (WG-SS) questions does not address albinism directly and so does not identify the people who have albinism as a distinct group. Recommendations have been made for a question to be added to the WG-SS that explicitly asks if the person has albinism. This recommendation is strongly supported by civil society groups working on albinism who have argued that identifying “albinism” as a distinct group allows for recognition of discrimination based not only on visual impairment but also based on colour/appearance which often leads to harmful practices including physical attacks. In addition, the inclusion of albinism as a distinctive category in the WG-SS also facilitates access to health for people with albinism given their high vulnerability to skin cancer. This element becomes invisible in government data if people with albinism are limited to the category of vision impairment alone. Background: Albinism definition & Statistics in Africa Albinism is a relatively rare, non-contagious, genetically inherited condition in which a person produces little to no melanin, resulting in little to no pigmentation, in the skin, hair and eyes. This lack of melanin often results in a pale or “white” appearance compared to other members of their family, community or ethnic group causing hypervisibility. In addition, the lack of melanin results in two congenital and permanent health conditions: visual impairment of varying degrees as well as high vulnerability to skin damage from ultraviolet rays, including skin cancer. Albinism affects people worldwide regardless of race, ethnicity or gender. Africa has one of the highest prevalence’s of persons with albinism in the world. In Africa, estimates on the occurrence of albinism range from 1 in every 5,000 people to 1 in every 15,000. In some populations in the region, including in Southern Africa, where 2|Page

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