About

Purpose of this website

The purpose of this website is to serve as a coordination platform for mobilizing resources and organizations committed to the implementation of the Regional Action Plan on albinism. Specifically the platform serves to:

  • Increase support for and knowledge about the Regional Action Plan.
  • Promote implementation through institutional and financial resource mobilization.
  • Report on progress, synergies and best practices.

To this end, the platform presents updated and accessible online information measuring progress regionally and by countries.

What is Albinism?

Albinism is non-contagious, genetically inherited and affects people regardless of race, 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 any or all of the skin, hair and eyes. Persons with albinism therefore often appear pale in comparison with members of their family and their communities. Both parents must carry the gene for a child to have albinism. In such cases, there is a 25 per cent chance at each pregnancy that a child will be born with albinism. Albinism is a condition with multiple subtypes. In addition to significantly affecting appearance, albinism often results in two congenital permanent health conditions: visual impairments to varying degrees and high susceptibility to ultraviolet-induced skin damage, in particular skin cancer.

Albinism in Africa

In sub-Saharan Africa, it has been widely documented that myths and misbeliefs surrounding persons with albinism have led to witchcraft-related harmful practices, involving the use of their body parts obtained through brutal attacks and mutilations. Hundreds of attacks including murder, mutilations, grave robberies, sexual violence, kidnapping and trafficking of persons and body parts have been reported across 27 countries in the region.

Albinism Worldwide

Statistics about the prevalence of albinism vary widely and no comprehensive studies have yet been conducted. It is reported that in North America and Europe, an estimate of 1 in every 6,600 to 20,000 (depending on the country) have albinism. In Africa it is estimated that 1 in every 5,000 to 15,000 people have albinism with selected populations having estimates as high as 1 in 1,000.

The impact of the condition on human rights and its perception by others, including its effect on social inclusion, vary by region. Information about albinism worldwide may be obtained from this summary report by the UN Independent Expert on albinism or from individual organizations of the world albinism alliance.

Sustainable Development Goals

The Regional Action Plan is well-aligned with the UN Sustainable Development Goals (Agenda 2030) and the African Union’s Development Agenda (Agenda 2063). Click here to see how.

Albinism and Human Rights

Persons with albinism are discriminated against on the basis of intersecting grounds, largely based on disability and colour. According to reports of the UN Independent Expert on the enjoyment of human rights by persons with albinism, discrimination based on colour exacerbates the consequences of disability, in particular when there is high degree of contrast between the colouring of persons with albinism and that of the dominant population. In other words, discrimination against persons with albinism should be understood as a specific situation stemming from the intersection of both disability and colour. Also, multiple discrimination affects subgroups and individuals among people with albinism. For instance, persons with albinism who are women and those affected by HIV/AIDS face aggravated discrimination. Therefore, an understanding of the challenges and identification of good practices to ensure the right of persons with albinism requires a holistic approach.

UN Independent Expert on the enjoyment of human rights by persons with albinism

In 2015, the Human Rights Council adopted a resolution establishing the mandate of an Independent Expert on the enjoyment of human rights by persons with albinism. For a period of three years, the independent Expert would engage with States, United Nations programs, and persons with albinism to:

  • Engage in dialogue and consult with States and other relevant stakeholders, including United Nations agencies, programmes and funds, regional human rights mechanisms, national human rights institutions, the private sector and donors.
  • Identify, exchange and promote good practices relating to the realization of the rights of persons with albinism and their participation as equal members of society.
  • Promote and report on developments towards and the challenges and obstacles to the realization of the enjoyment of human rights by persons with albinism in all regions of the world, and to make recommendations to the Human Rights Council in this regard.
  • Gather, request, receive and exchange information and communications from and with States and other relevant sources, including persons with albinism and their representative organizations and other civil society organizations, on violations of the rights of persons with albinism.
  • Conduct, facilitate and support the provision of advisory services, technical assistance, capacity-building and international cooperation in support of national efforts for the effective realization of the rights of persons with albinism and to prevent violence.
  • Raise awareness on the rights of persons with albinism and to combat stereotypes, prejudices and harmful traditional practices and beliefs that hinder their enjoyment of human rights and participation in society on an equal basis with others.
  • Promote awareness of their positive contributions and to inform persons with albinism about their rights.
  • Report to the Human Rights Council, starting from its thirty-first session, and to the General Assembly.

The resolution also recommended to integrate a gender perspective throughout the work of the mandate and to pay specific attention to the challenges and needs of women and girls to address the multiple, intersecting and aggravated forms of discrimination faced by women and girls with albinism.

In 2018, the mandate of the Independent Expert was extended by Human Rights Council for another three years via Resolution 37/5

More on the Mandate at:

https://www.ohchr.org/EN/Issues/Albinism/Pages/Mandate.aspx

USEFUL LINKS:

Facebook

This site has a corresponding Facebook page. Join the discussion on implementation of the Regional Action Plan, share your successes, lessons and best practices on our Facebook page: facebook.com/actiononalbinism

Selected reports

This report summarizes the international human rights, legal and policy framework applicable to persons with albinism.

This report summarizes the Africa regional human rights, legal and policy framework applicable to persons with albinism.

This report pertains to the health rights of persons with albinism and makes recommendations on the issues.

This report summarizes issues pertaining to witchcraft related harmful practices.

United Nations

International Albinism Awareness Day

In 2014, the United Nations declared June 13 as International Albinism Awareness Day. For more information on this Day, visit the UN site: http://www.un.org/en/events/albinismday/message.shtml Also visit this site run by civil society: albinismday.com and facebook.com/albinismday

United Nations Campaign Site

Discover inspirational stories told by persons with albinism, their supporters assisting them medically and those advocating for their human rights. For more, visit http://albinism.ohchr.org/

Disabilities Strategies and Action Plans by Country/Area

This UN webpage provides links to more than 100 disability strategies and actions plans. It aims at facilitating knowledge-sharing and identifying good practices in disability-inclusive development and the promotion of the rights of persons with disabilities. View these strategies at https://www.un.org/development/desa/disabilities/strategies.html/

World

Global Albinism Alliance

The Global Albinism Alliance (GAA) brings together albinism societies from around the world. For more information, visit:facebook.com/GlobalAlbinism or email: albinismalliance.pilot@gmail.com

Acknowledgements

We wish to acknowledge all the entities that have submitted reports for this site and look forward to continued engagement including more reports from you. We also wish to thank Patricia Wilocq for her beautiful award-winning photos. See her full work at http://www.patriciawillocq.com/. Finally we thank the Task Force of the RAP and the team of the UN Independent Expert on albinism.