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

MANDATE OF THE INDEPENDENT EXPERT ON THE ENJOYMENT OF HUMAN RIGHTS BY PERSONS WITH ALBINISM

The Independent Expert on the enjoyment of human rights by persons with albinism is one of the thematic special procedures overseen by the United Nations Human Rights Council. Albinism is a rare genetic condition that causes a lack of pigment in the hair and skin. The physical appearance of individuals with albinism has contributed to their marginalization and social exclusion as well as violence and discrimination against them.

The Independent Expert examines the situation of persons with albinism around the world and works to end stigma and prejudice against them through the promotion of the rights of persons with albinism. The Independent Expert accomplishes this by engaging in discussions with States and other relevant stakeholders, requesting and reviewing information pertaining to alleged violations of the rights of persons with albinism from States and civil society, raising awareness on the rights of persons with albinism and combating prejudice, reporting on and promoting best practices in the realization of the rights of persons with albinism, and making recommendations to the Human Rights Council to address the challenges in this area.

The Independent Expert must apply a gender perspective throughout the work of their mandate.

COMPOSITION AND WORKING METHODS

The mandate of the Independent Expert lasts for a period of three years and is filled by one highly qualified individual.

The UN Human Rights Council established the Independent Expert position in 2015 with Resolution 28/6. In fulfilling the mandate, the Independent Expert makes country visits, reviews complaints, and reports annually to the UN General Assembly and Human Rights Council.

Country Visits

One important function of the Independent Expert is to conduct country visits, which it does on the basis of an invitation from the country concerned. Country visits allow the Independent Expert to examine the national legislation, policies, regulatory frameworks, and institutions and practices in the country and to identify best practices and gaps in protection. The Independent Expert then reports the findings to the Human Rights Council and proposes ways in which the rights of those with albinism can be better protected in the visited nation.

More than 100 countries have extended standing invitations to country visits by all thematic special procedures. View the list of countries that have extended standing invitations here.

Receiving Information & Complaints

The Independent Expert receives information and complaints regarding the experiences of persons with albinism. Anyone can submit such information, including persons with albinism, their representative organizations, and civil society organizations. There is no need to exhaust domestic remedies before contacting the Independent Expert. Importantly, the Independent Expert does not issue decisions concerning individual complaints and cannot require the State to remedy any alleged violation; rather, the Independent Expert raises the issue of concern with the relevant State.

The Independent Expert then connects with States on these matters by presenting them with “communications,” which can address past or ongoing issues. Communications generally request clarification about any allegations with the goal of initiating a productive discussion with the relevant government in order to resolve the issues. Communications can come in one of two forms – allegation letters or urgent appeals.

The communications sent by the Special Rapporteur and other special procedures are also compiled in periodic reports submitted to the UN Human Rights Council at each of its regular sessions.

Allegation Letters

Generally, the Independent Expert sends an allegation letter to a State when the alleged violation has already occurred, relates to a general pattern of violations, or is not so pressing as to warrant the issuance of an urgent appeal. An allegation letter generally contains a request for the government to clarify the substance of the allegation and to forward any information related to the allegation to the Independent Expert.

Urgent Appeals

Urgent appeals are reserved for cases in which sufficient credible and reliable information indicates that an individual’s human rights may be violated and that a situation is time sensitive. The Independent Expert uses urgent appeals to provide information to the government concerned and request comments and observations in return.

Reports to the UN General Assembly and Human Rights Council

The Independent Expert reports annually to the UN General Assembly and Human Rights Council on all activities related to its mandate. Past reports are available on the Independent Expert’s webpage.

SUBMITTING INFORMATION OR COMPLAINTS

Complaints should be submitted to the Independent Expert via email to [email protected] or [email protected], or through the online submission form. Submissions should include the following information:

  • Name(s) of the alleged victim(s)
  • Alleged violation(s) or abuse(s)
  • Information about the perpetrator(s) (if known)
  • Whether and what kind of action has been taken by authorities
  • Name(s) and contact information of whomever submits the complaint

Note that the identities of alleged victims will be communicated to States, so it is necessary for alleged victims to consent to such disclosure. After submitting a complaint, it is important to keep the Independent Expert up-to-date on any developments in the case, particularly if there is any change in the situation of the victim(s).

The Independent Expert may also be contacted by:

  • Mail:

Independent Expert on the enjoyment of human rights by persons with albinism
c/o Office of the UN High Commissioner for Human Rights
Palais des Nations
CH-1211 Geneva 10
Switzerland