A/HRC/55/45 I. Introduction 1. The present report of the Independent Expert on the enjoyment of human rights by persons with albinism, Muluka-Anne Miti-Drummond, 1 is submitted pursuant to Human Rights Council resolutions 28/6 and 46/12. The report focuses on the right to education for persons with albinism and their experiences in different regions. 2. In preparing the report, a call for inputs was sent to various stakeholders, including Member States, civil society organizations and persons with albinism. Submissions were received from the Bolivarian Republic of Venezuela, Chile, El Salvador, Italy, Malaysia, South Africa and Zimbabwe. Responses were also received from civil society organizations, covering 14 countries. 2 The United Nations Children’s Fund (UNICEF) Eastern and Southern Africa regional office also provided inputs covering eight countries.3 In addition, two interviews were conducted and a virtual consultation was held with focus groups from Africa, Europe, North and South America, the Asia-Pacific and Australia. An online survey received responses from 28 countries.4 The report was further supplemented by a survey on albinism carried out in the United Kingdom of Great Britain and Northern Ireland, to which 18 people responded, and the outcome of a round-table discussion on albinism in the United Kingdom, held on 9 June 2023, chaired by the Independent Expert in dialogue with persons with albinism, their families and relevant civil society organizations. 3. Albinism is a rare, non-contagious, genetically inherited condition that occurs at varying frequencies in populations all over the world, regardless of race or ethnicity. 5 The most common form of albinism, oculocutaneous albinism, is characterized by the lack of melanin pigment in the hair, skin and the eyes, causing susceptibility and vulnerability to skin damage from exposure the sun, including skin cancer. Moreover, lack of melanin in the eyes also contributes to visual impairments, including photophobia, strabismus, nystagmus, low visual acuity and refractive error. Prevalence figures for oculocutaneous albinism vary from region to region: Africa has the highest incidence, with an average rate of approximately 1 case in 4,000, whereas in Europe there is an estimated rate that is three times lower, with an average of approximately 1 case in 13,000.6 II. Normative and policy framework A. Relevant international human rights laws and standards 4. The right to education is a fundamental human right and has a solid basis in international human rights law. Key international human rights instruments affirm and protect the right to education, including the Universal Declaration of Human Rights (article 26), the International Covenant on Economic, Social and Cultural Rights (article 13), the Convention on the Rights of the Child (article 28), the Convention on the Elimination of All Forms of Discrimination against Women (article 10), the Convention on the Elimination 1 2 3 4 5 6 2 The development of the tools for the conduct of the interviews, data analysis and the drafting of the report was carried out by Paul Lynch, Senior Lecturer in Inclusive Education, School of Education, University of Glasgow, United Kingdom of Great Britain and Northern Ireland. Benin, Burkina Faso, Brazil, Czechia, France, Kenya, Nigeria, Rwanda, Sierra Leone, South Africa, Togo, Uganda, United Republic of Tanzania and Zambia. Angola, Comoros, Kenya, Lesotho, Madagascar, Malawi, Mozambique, Namibia, Rwanda, Uganda, United Republic of Tanzania, Zambia and Zimbabwe. Argentina, Australia, Austria, Brazil, Canada, Chile, Côte d’Ivoire, Czechia, Dominican Republic, Ecuador, Finland, Germany, Ghana, Guatemala, India, Japan, Malaysia, Mali, Mexico, Philippines, Rwanda, Spain, Togo, Türkiye, Uganda, United Kingdom of Great Britain and Northern Ireland, United Republic of Tanzania and United States of America. Jennifer G.R. Kromberg, “Epidemiology of albinism”, in Jennifer G.R. Kromberg and Prashiela Manga, eds., Albinism in Africa: Historical, Geographical, Medical, Genetic, and Psychosocial Aspects (San Diego, Elsevier, Academic Press, 2018), pp. 57–79. Jennifer G.R. Kromberg et al., “Determining a worldwide prevalence of oculocutaneous albinism: a systematic review”, Investigative Ophthalmology & Visual Science, vol. 64, No. 14 (July 2023). GE.23-25833