A/HRC/37/57 recommendations of the Independent Expert, which were based on her visit to the country in 2016. B. Other responses Technological responses 87. There are specialized institutions and organizations that provide information on technological responses to the challenges posed by albinism, particularly visual aids and sun protection devices. That is important, because such devices, separately or together, may constitute a part of reasonable accommodation for each person with albinism. For instance, the National Organization for Albinism and Hypopigmentation provides regularly updated technical information on low-vision aids, including magnifiers, microscopes and telescopes, non-optical devices and strategies to improve one’s vision. Similarly, the National Library of Medicine in the United States of America provides online medical information on albinism, including advice on genetic testing to identify the type of albinism and management of its signs and symptoms, particularly visual impairment and skin protection. 88. In Kuwait, technological services and approaches are applied in all hospitals to ensure complete diagnosis, including physical examinations, descriptions of changes in pigmentation, thorough eye examinations and genetic testing.88 Access to surgery and more specialized treatment 89. The type of surgery required for treating visual impairment may include strabismus surgery for either functional (improved peripheral fusion) or cosmetic procedures. Skin cancer treatment, including where there is a slightly enhanced risk of cutaneous melanoma, is not specific to albinism and includes cryogenic treatment, radiotherapy and chemotherapy.89 Early intervention measures: registration, counselling and training of nurses and medical staff, particularly in more remote areas 90. Registering persons with albinism at birth represents an important first response to address their health condition. Firstly, it provides the opportunity to inform and counsel the mother and the family about albinism and measures regarding skin protection and managing visual impairment as the child grows. Early information and care increase the prospect of the highest attainable standard of health of persons with albinism. However, records must have adequate safeguards to ensure the right to privacy and to prevent misuse of data for attacks, discrimination or other illicit acts. 91. Many studies confirm the need for awareness-raising and training of nurses and medical staff on albinism, particularly in remote areas. In this regard, good practices have been documented in South Africa in the clinical genetic outreach programme. That programme, which began in 1990, operates as a form of early intervention in the following manner: senior nurses at large rural hospitals, trained in medical genetics, form a network of professionals who identify babies with common genetic disorders at birth and offer immediate support and counselling. 90 92. Counselling for mothers is essential in overcoming ignorance and misbeliefs about albinism and encouraging acceptance of their children. It also provides advice on the care necessary to prevent skin cancer. Counselling mothers can also prevent infanticide by demystifying the condition of albinism. In that regard, training on albinism for midwives and traditional birth attendants should be prioritized. 91 In addition to counselling, early intervention kits should be made available. For instance, the Kuwait Medical Genetic 88 89 90 91 18 Submission of Kuwait. United States of America, Department of Health and Human Services, National Institutes of Health. P.M. Lund, “Oculocutaneous albinism in southern Africa”, p. 170. Submission of the Source of the Nile Union of Persons with Albinism.

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