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Witchcraft and the human rights of persons with albinism 2017, para. 15
- Document type
- Special Procedures' report
- Paragraph text
- Albinism is a relatively rare, non-contagious, genetically inherited condition that affects people worldwide regardless of ethnicity or gender. It results from a significant deficit in the production of melanin and is characterized by the partial or complete absence of pigment in the skin, hair and eyes. Persons with albinism therefore often appear pale in comparison to members of their family and their communities. For a person to be affected by albinism, both parents must carry the gene, and in such cases there is a 25 per cent chance at each pregnancy that a child will be born with albinism. The frequency of albinism varies by region. In Europe and North America, the reported frequency is 1 in 17,000 to 1 in 20,000 births. The frequency in certain parts of the Pacific is reported to be 1 in 700. Among some indigenous peoples in South America, the reported frequency is 1 in 70 to 1 in 125. In sub-Saharan Africa, the reported frequency ranges from 1 in 5,000 to 1 in 15,000, with prevalence rates of 1 in 1,000 to 1 in 1,500 for selected populations. An important caveat is that some studies of the frequency of albinism often lack objectivity in their methodology or are incomplete, rendering estimates as best guesses in most instances.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Children
- Ethnic minorities
- Families
- Year
- 2017
- Date added
- Aug 19, 2019
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 50
- Document type
- Special Procedures' report
- Paragraph text
- Victims of attacks and their families are left deeply traumatized and are in dire need of assistance in rebuilding their lives and restoring their dignity, including psychosocial assistance.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Health
- Person(s) affected
- Families
- Year
- 2016
- Date added
- Aug 19, 2019
Paragraph
Vision for the mandate 2016, para. 40
- Document type
- Special Procedures' report
- Paragraph text
- Yet, there are several effective ways to prevent skin cancer, including the use of sun protection cream, which is topically applied, or wearing sun-protective clothing with long sleeves, wide-brimmed hats and sunglasses. Given the accessibility and effectiveness of protective clothing, skin cancer could be significantly prevented at little cost with the right level of public education and early intervention programmes targeting persons with albinism and their families.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Families
- Year
- 2016
- Date added
- Aug 19, 2019
Paragraph
Witchcraft and the human rights of persons with albinism 2017, para. 66
- Document type
- Special Procedures' report
- Paragraph text
- Measures identified can be implemented by integrating them into existing, broader frameworks, including laws and policies to implement the rights of persons with disabilities, on access to health, on the rights of women and children, on access to justice services, on victim support services and to eliminate racial discrimination (including discrimination based on colour). Such measures should be extended to the family members of persons with albinism and, in particular, to mothers of children with albinism and women generally. At the same time, specific measures of protection and anti-discrimination for persons with albinism should also be carried out where possible, particularly in countries affected by attacks against persons with albinism and where neglect of this group has been historical and dire.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Children
- Families
- Persons with disabilities
- Women
- Year
- 2017
- Date added
- Aug 19, 2019
Paragraph
Vision for the mandate 2016, para. 38
- Document type
- Special Procedures' report
- Paragraph text
- Studies often link the prevalence of skin cancer to factors such as the lack of basic understanding of albinism, particularly by persons with albinism and their families. For example, it is not uncommon for parents to put a newborn with albinism out in the sun for hours. Displaced persons with albinism are exposed to a heightened risk of skin cancer as they are mostly outside of their usual environment and have limited means to address their health needs. Also at particular risk of developing skin cancer are persons with albinism who work outdoors, such as farmers or traders. Such outdoor occupations also emphasize the link between the risk of contracting skin cancer and poverty.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Families
- Infants
- Persons on the move
- Year
- 2016
- Date added
- Aug 19, 2019
Paragraph
Vision for the mandate 2016, para. 24
- Document type
- Special Procedures' report
- Paragraph text
- It has been reported that there is a market for body parts of persons with albinism. The body parts are reportedly sold both locally and across borders. The prices of body parts reportedly range from $2,000 for a limb to $75,000 for a "complete set" or a corpse. Civil society reports indicate that, motivated by those prices, family members and communities have sold, or attempted to sell, persons with albinism, thereby fuelling the supply side of this macabre trade. The prices also indicate the involvement of wealthy individuals as they stand in sharp contrast to the average annual income per capita reported in the affected regions. Given the underground nature of this trade, further study is needed to assess its scope and extent and, on that basis, to identify effective measures.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Health
- Person(s) affected
- Families
- Year
- 2016
- Date added
- Aug 19, 2019
Paragraph
Vision for the mandate 2016, para. 12
- Document type
- Special Procedures' report
- Paragraph text
- Albinism is a rare, non-contagious, genetically inherited condition that affects people worldwide regardless of ethnicity or gender. It results from a significant deficit in the production of melanin and is characterized by the partial or complete absence of pigment in the skin, hair and eyes. In order for a person to be affected by albinism, both parents must carry the gene and, in that case, there is a 25 per cent chance that a child will be born with albinism at each pregnancy. The proportion of persons affected by albinism in the world differs from region to region. For example, in North America and Europe, it is estimated that 1 in 17,000 to 20,000 people are affected by the condition, while in sub-Saharan Africa, 1 in 5,000 to 15,000 could be affected, with specific countries having a much higher tendency, including estimated rates of 1 in 1,400, and about 1 in 20 persons in the general population carrying the gene for albinism. Other studies suggest that in specific groups in Panama or in the Pacific region, the rate of people affected could be as high as 1 in 70 to 1 in 125.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Equality & Inclusion
- Health
- Person(s) affected
- Children
- Families
- Year
- 2016
- Date added
- Aug 19, 2019
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 26
- Document type
- Special Procedures' report
- Paragraph text
- Family members, friends and service providers are not immune to the practice of self-distancing from persons with albinism. This is illustrated by the following testimony of a person with albinism: "my mother distances herself from me … I had girlfriends who preferred to quietly meet me away from the public. You go to a party; they won't want to dance with you". Similarly, it was reported that, in certain cases, nurses and other medical professionals, including physicians, were reluctant to touch or treat patients with albinism. In such a context, it is not uncommon that persons with albinism self-limit their interactions within the community and shy away from attending school.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Equality & Inclusion
- Harmful Practices
- Health
- Person(s) affected
- Families
- Year
- 2016
- Date added
- Aug 19, 2019
Paragraph
Preliminary survey on the root causes of attacks and discrimination against persons with albinism 2016, para. 11
- Document type
- Special Procedures' report
- Paragraph text
- The lack of understanding of the condition is also illustrated by myths that persons with albinism cannot have children who do not have albinism, or that they are sterile. Furthermore, it is often believed that persons with albinism can only be found within one`s proximate race; consequently, the worldwide status of the condition is often not generally known. This narrow understanding of the frequency of albinism feeds into myths which present the condition as a particular problem supernaturally aimed at specific women and families.
- Body
- Independent Expert on the enjoyment of human rights by persons with albinism
- Topic(s)
- Equality & Inclusion
- Harmful Practices
- Health
- Person(s) affected
- Children
- Families
- Women
- Year
- 2016
- Date added
- Aug 19, 2019
Paragraph
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