A/HRC/37/57 Centre provides parents with instructions and advice on precautions to help children learn self-care practices.92 Reaching circles of persons affected 93. A 2006 epidemiological study on albinism in sub-Saharan Africa, based on a World Health Organization pilot survey, investigated the situation of people with albinism in Africa, estimated that there were tens of thousands of people living with albinism in Africa and called for increased awareness and public health interventions to respond adequately to the medical, psychological and social needs of people with albinism. It recommended that, based on the estimates available and the severity of social issues faced by persons with albinism and their families, there should be a public health response to increase attention on this group of people.93 94. It is important to note that the above-mentioned study was conducted in advance of, and therefore without reference to, the violent attacks on persons with albinism, which were first reported internationally in about 2006. It is safe to say that its recommendation to extend support to all those directly affected by albinism has become even more compelling in the light of those attacks, as reports sent to the Independent Expert indicate that family members have also been affected by the attacks, both directly and indirectly. In recognition of the situation, the United Nations Voluntary Fund for Victims of Torture has provided funding to civil society to provide medical, psychological and social assistance support to persons with albinism who are attacked, together with their families. 95. Civil society organizations, such as Standing Voice and Under the Same Sun in the United Republic of Tanzania, are also trying to meet the need to assist family members of persons with albinism by running women’s groups across the country. These groups consist of women with albinism and mothers of children with albinism. Various civil society groups globally have also reported doing outreach for the family members of persons with albinism in their ordinary course of work. However, these acts are only a drop in the bucket, as they are often ad hoc and not systemized, and therefore have limited reach. VI. Conclusion and recommendations 96. The main health issues faced by persons with albinism, namely visual impairment, high susceptibility to skin cancer and misbeliefs about the condition of albinism, have been known for more than half a century. Today, responses to those issues are mainly led by the tireless work of nascent organizations of persons with albinism and other civil society organizations, and are supported by research in this area. Nevertheless, those measures still need to be mainstreamed in health policies and strategies worldwide. 97. Accordingly, the Independent Expert recommends that Member States, particularly those in which there are records of attacks and in which the issue has been left out of mainstream health policies: General measures (a) Address health-related aspects of albinism as a public health concern; (b) Ensure the adoption of special measures on persons with albinism in policies governing health and disabilities, as well as the training curricula of healthrelated professions. 92 93 Submission of Kuwait. Esther S. Hong, Hajo Zeeb and Michael H. Repacholi, “Albinism in Africa as a public health issue”, BMC Public Health, vol. 6 (2006). Available at www.ncbi.nlm.nih.gov/pmc/articles/PMC1584235. 19