A/HRC/43/42
104. The Independent Expert recommends that Member States take the following
measures, which require integration of the issues raised in the present report into the
relevant sectors.
105.
Incorporate albinism into public health initiatives, including through:
(a)
Maternal and family support policies;
(b)
Cancer prevention policies;
(c)
Rare condition policies;
(d)
Genetic counselling policies,
consanguineous marriage practices.
106.
particularly
in
communities
with
Implement albinism development initiatives, including through:
(a)
National development plans and strategies aimed at the protection of
vulnerable groups, which give life and true meaning to the pledge in the 2030 Agenda
for Sustainable Development to leave no one behind;
(b)
The elimination of harmful practices;
(c)
Policies relating to disability, education and access to justice;
(d)
Policies relating to ending colour and racial discrimination.
107. The Independent Expert recommends that Member States ensure provision of
the following to women and children with albinism:
(a)
Access to education and socioeconomic development;
(b)
Income-generating activities;
(c)
Adaptive devices, among other measures of reasonable accommodation,
to improve access to employment and education;
(d)
Human rights training and capacity development for organizations
representing women and children impacted by albinism;
(e)
Access to justice, redress and rehabilitation;
(f)
Remedial support for women and children who have been victims of
attacks, including rehabilitation services, in the form of medical, psychological and
socioeconomic support in regaining their livelihood;
(g)
Adequate witness protection for women and children impacted by
albinism who wish to testify against family or community members who have
perpetrated attacks against them;
(h)
Quality legal counsel at no cost to witnesses of attacks, particularly for
survivors who testify during trial to ensure substantive and procedural fairness in
accessing judicial remedies.
108. The Independent Expert recommends that Member States empower civil
society organizations representing persons with albinism to:
(a)
Raise awareness about albinism among health and medical professionals,
particularly in the maternity, oncology and cancer prevention sectors, by integrating
albinism into existing training modules;
(b)
Adopt awareness-raising measures to educate men about the genetic
origins of albinism.
109. The Independent Expert recommends that Member States include persons with
albinism in national censuses, pursuant to best practices and the recommendation of
the Washington Group on Disability Statistics, and in national health surveys in order
to gather data disaggregated at a minimum by sex and age.
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