Addressing the challenges of persons living with a rare disease and
their families
A/RES/78/173
many of whom are children, by ensuring equal opportunities to achieve their optimal
potential development and to fully, equally and meaningfully participate in society,
Reaffirming the right of every human being, without distinction of any kind, to
the enjoyment of the highest attainable standard of physical and mental health an d to
a standard of living adequate for the health and well-being of oneself and one’s family,
including adequate food, safe drinking water, clothing and housing, and to the
continuous improvement of living conditions, with particular attention to the alarm ing
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 Sustain able 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 21 September 2023, and reaffirming its political declaration,
entitled “Universal health coverage: expanding our ambition for health and wellbeing in a post-COVID 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,
Concerned that reaching the correct diagnosis can take over five years, that
many persons living with a rare disease never receive an adequate diagnosis, and that
insufficient screening programmes, including newborn screening, and unequal access
to diagnostic services, infrastructure and expertise contribute to delayed diagnosis,
when nearly half of genetic diseases start in childhood,
Recognizing that timely diagnosis and early access to health services can slow
disease progression, save lives, and provide greater visibility and facilitate full
inclusion on equal basis with others for persons living with a rare disease,
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6
2/7
Resolution 78/4, annex.
23-25974