Addressing the challenges of persons living
with a rare disease and their families
A/RES/76/132
situation of millions of people for whom access to health-care services and medicines
remains a distant goal, owing to a number of different barriers, in particular people
who are in vulnerable situations, including those in developing countries,
Recognizing that some persons living with a rare disease have disabilities and
impairments, which may have a greater impact on their health, and that they may also
face attitudinal and environmental barriers, which may hinder their full and effective
participation in society on an equal basis with others,
Reaffirming that health is a precondition for and an outcome and indicator of
the social, economic and environmental dimensions of sustainable development and
the implementation of the 2030 Agenda for Sustainable Development, and
acknowledging the reciprocal benefits between the attainment of Sustainable
Development Goal 3 and the achievement of all other Goals,
Recognizing the fundamental importance of equity, social justice and social
protection mechanisms as well as the elimination of the root causes of discrimination
and stigma in health-care settings to ensure universal and equitable access to quality
health services without financial hardship for all people, particularly for those who
are in vulnerable situations, including those living with a rare disease,
Recognizing also that persons living with a rare disease and their families should have
access to social protection and assistance that enables them to contribute towards the full
and equal enjoyment of their rights and to ensure a safe and supportive family environment,
Recalling the outcomes of the high-level meeting on universal health coverage,
held in New York on 23 September 2019, and reaffirming its political declaration,
entitled “Universal health coverage: moving together to build a healthier world”, 6
including the commitment therein to strengthen efforts to address rare diseases as part
of universal health coverage,
Deeply concerned that the coronavirus disease (COVID-19) pandemic
perpetuates and exacerbates existing inequalities, and that those disproportionately at
risk are women and girls and persons in vulnerable situations, recognizing the
unprecedented and multifaceted effects of the pandemic, including the impact on
access to essential health services, recognizing also the disproportionate impact of
COVID-19 on the health, social and economic situation of persons living with a rare
disease,
Expressing concern that persons living with a rare disease and their families can
be at greater risk of being disproportionately affected by stigma, discrimination and
social exclusion, and that one of the major barriers to improving the inclusion and
participation of persons living with a rare disease and their families in society is the lack
of knowledge and expertise in the field and a lack of awareness regarding the issue,
Underscoring the need to address the root causes of inequality and
discrimination faced by persons living with a rare disease and their families, and
in this regard recognizing that there is a need for policies and programmes to
prevent and combat prejudice, to foster inclusion and to create an environment
conducive to respect for their rights and dignity,
Recognizing that persons living with a rare disease and their families may be
psychologically, socially and economically vulnerable throughout their life course,
facing specific challenges in several areas, including but not limited to health,
education, employment and leisure,
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Resolution 74/2.
21-19154