A/HRC/24/57
8.
The present report contains a compilation and review of information from different
sources, including those mentioned above, as well as information from OHCHR field
presences. The particular focus on Africa is explained by the fact that, according to the
information received, all the cases of ritual attacks against persons with albinism have
occurred in African countries. The written submissions and information gathered, including
from United Nations sources, refer mainly to this region.
9.
The collection and verification of cases of ritual attacks is a challenge due to the
secret nature of witchcraft rituals, the inability and/or fear of victims’ relatives to report
such incidents, as well as the limited capacity of associations of persons with albinism to
monitor human rights violations.
III. Definition
10.
Albinism is a rare, non-contagious, genetically inherited condition present at birth.
In almost all types of albinism,8 both parents must carry the gene for it to be passed on,
even if they do not have albinism themselves. The condition is found in both genders,
regardless of ethnicity and in all countries of the world.
11.
Albinism results in a lack of pigmentation (melanin) in the hair, skin and eyes,
causing vulnerability to the sun and bright light. As a result, almost all people with albinism
are visually impaired and are prone developing skin cancer. There is no cure for the
absence of melanin.
12.
Many types of albinism exist: the most common form is known as oculocutaneous
albinism (OCA) and affects the skin, the hair and the eyes. There are different types and
subtypes of OCA, with varying degrees of melanin deficiency. The main ones are
tyrosinase negative (OCA1) and tyrosinase positive (OCA2). In OCA1, there is little or no
melanin production. In the more prevalent – particularly in African countries – OCA2 type,
some melanin is produced, giving rise to sandy-coloured hair and light brown irises in those
affected.
13.
Another less common form is ocular albinism (OA), which only affects the eyes. A
more rare form of albinism is known as Hermansky-Pudlak syndrome (HPS) and is
accompanied by bleeding disorders and large bowel (colitis) and lung diseases.
14.
The prevalence of albinism varies across the world. Reports suggest that in North
America9 and Europe an estimated 1 in every 20,000 persons have some form of albinism.10
7
8
9
4
Human Rights Commission of Togo.
Albinism Empowerment Network (Kenya), Albinism Fellowship of Australia, Albinos Sans
Frontières (Burundi), Bien-être des Albinos de Côte d’Ivoire, Confédération nationale des Albinos de
Guinée, Écran Total (Cameroon), Fondation Mwimba Texas (Democratic Republic of the Congo),
Association Burkinabè pour l’intégration des personnes albinos, Association des femmes albinos
“Espoir” (Burundi), Association nationale des Albinos de Côte d’Ivoire, Association nationale des
Albinos du Sénégal, Association nationale des Albinos du Togo, Association pour la promotion des
Albinos au Cameroun, Organisation mauritanienne pour l’appui et l’insertion des Albinos, RCN
Justice & Démocratie (Belgium), Association of Gambia Albinos, Witchcraft and Human Rights
Information Network (WHRIN), Rotary International, Somali-Canadian Cultural Society of
Edmonton and Under the Same Sun (UTSS) (Canada). The Salif Keita Global Foundation made an
oral submission in a meeting with OHCHR.
The exception is one type of ocular albinism, which is passed on from mother to son.
The National Organization for Albinism and Hypopigmentation (NOHA) refers on its webpage to 1
person in 17,000 having some type of albinism in the United States of America. Available from
www.albinism.org/publications/what_is_albinism.html.
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