Thematic Entry Points

Data Collection

Statistics and disaggregated data on albinism remain relatively difficult to find, particularly in areas were the worst human rights violations against persons with albinism occur. In order to move towards policy changes, data collection, both qualitative and quantitative, and comparative analyses are fundamental in order to fully understand the current situation of persons with albinism.


The barriers to guaranteeing the right of access to justice for persons with albinism who have been victims of human rights violations include:

  • Support, in collaboration with partners, grassroots organizations in collecting data that are accurate, standardized and disaggregated.


  • Census
  • Household surveys
  • National registry developed and/or consolidated by local civil society organizations
  • Note: Provide adequate safeguards for all data amassed on persons with albinism to ensure the protection of their right to privacy and to prevent misuse of data for attacks, discrimination or other illicit acts

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