A/RES/76/132

United Nations

General AssemblyDistr.: General
5 January 2022

Seventy-sixth session
Agenda item 28
Social development

Resolution adopted by the General Assemblyon 16 December 2021
[on the report of the Third Committee (A/76/454, para. 51)]

76/132.

Addressing the challenges of persons living with a rare disease andtheir families
The General Assembly,
Recalling the Universal Declaration of Human Rights, 1 the International
Covenant on Economic, Social and Cultural Rights, 2 the Convention on the
Elimination of All Forms of Discrimination against Women, 3 the Convention on the
Rights of the Child 4 and the Convention on the Rights of Persons with Disabilities, 5
Reaffirming its resolution 70/1 of 25 September 2015, entitled “Transforming
our world: the 2030 Agenda for Sustainable Development”, in which it adopted awide, far-reaching, and people-centred set of universal and transformative
Sustainable Development Goals and targets, and its commitment to working tirelessly
for the full implementation of the Agenda by 2030, with the endeavour to reach thefurthest behind first, including persons living with a rare disease,
Recognizing the need to promote and protect the human rights of all persons,
including the estimated 300 million persons living with a rare disease worldwide,
many of whom are children, by ensuring equal opportunities to achieve their optimalpotential development and to fully, equally and meaningfully participate in society,Reaffirming the right of every human being, without distinction of any kind, tothe enjoyment of the highest attainable standard of physical and mental health and toa 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 thecontinuous improvement of living conditions, with particular attention to the alarming__________________

Resolution 217 A (III).
See resolution 2200 A (XXI), annex.
3
United Nations, Treaty Series, vol. 1249, No. 20378.
4
Ibid., vol. 1577, No. 27531.
5
Ibid., vol. 2515, No. 44910.
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situation of millions of people for whom access to health-care services and medicinesremains 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 andimpairments, 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 andthe implementation of the 2030 Agenda for Sustainable Development, andacknowledging 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 discriminationand stigma in health-care settings to ensure universal and equitable access to quality
health services without financial hardship for all people, particularly for those whoare in vulnerable situations, including those living with a rare disease,
Recognizing also that persons living with a rare disease and their families should haveaccess to social protection and assistance that enables them to contribute towards the fulland 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 partof universal health coverage,
Deeply concerned that the coronavirus disease (COVID-19) pandemic
perpetuates and exacerbates existing inequalities, and that those disproportionately atrisk are women and girls and persons in vulnerable situations, recognizing theunprecedented and multifaceted effects of the pandemic, including the impact onaccess to essential health services, recognizing also the disproportionate impact of
COVID-19 on the health, social and economic situation of persons living with a raredisease,Expressing concern that persons living with a rare disease and their families canbe at greater risk of being disproportionately affected by stigma, discrimination andsocial exclusion, and that one of the major barriers to improving the inclusion andparticipation of persons living with a rare disease and their families in society is the lackof knowledge and expertise in the field and a lack of awareness regarding the issue,
Underscoring the need to address the root causes of inequality anddiscrimination faced by persons living with a rare disease and their families, andin this regard recognizing that there is a need for policies and programmes toprevent 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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Reaffirming that inclusive and equitable quality education and lifelong learning
opportunities without discrimination are essential for the full, equal and meaningful
participation in all aspects of social, cultural, political and economic life, andrecognizing that, in particular, children living with a rare disease may face multiple
challenges in accessing quality education owing to the inaccessibility of facilities andnon-adapted teaching methods, among others,
Reaffirming also that access to full and productive employment and decent work
is also an important aspect of full, equal and meaningful participation in society andeconomic life, and that persons living with a rare disease and their families facechallenges in access to, retention of and return to employment,
Reaffirming further the need to achieve gender equality and to empower womenand girls, and concerned by the fact that women and girls living with a rare disease
face more discrimination and barriers in accessing health-care services, including
sexual and reproductive health-care services, and education, as well as fully, equallyand meaningfully participating in public life, and that women and girls undertake adisproportionate share of unpaid care and domestic work when a member of theirhousehold or family lives with a rare disease, and that women face more barriers inaccessing decent work,
Deeply concerned that persons living with a rare disease, especially women andchildren, often face barriers in accessing water and san itation facilities that areaccessible and appropriate to their needs, which has an impact on their ability toparticipate fully in all aspects of life, including their access to education, and for
women to live independently and ensure their access to employment, which isparticularly concerning in situations of homelessness,
Recognizing the need to foster innovation and the positive contribution that
innovation can make in promoting social cohesion, reducing inequalities andexpanding opportunities for all, including persons living with a rare disease and themost vulnerable people, and in that regard recognizing the need to support, streamline
and increase attention to research on rare diseases,
Expressing concern at the lack of disaggregated data, including by income, sex,age, race, ethnicity, migration status, disability, geographical location and othercharacteristics relevant in national contexts, on persons living with a rare disease,which would help to identify and address the barriers faced in exercising their humanrights,Recognizing the important role that civil society organizations play incollecting, analysing and disseminating the limited existing information on thechallenges of persons living with a rare disease and in providing support services tothem and advocating on their behalf for better lives,
Recognizing also the need for the participation of persons living with a raredisease in civil, political, social, economic and cultural life, and that the effective andmeaningful participation of persons living with a rare disease in decision -making,including through their representative organizations, can strengthen the effectivenessof national, regional and international policy and development programmes related topersons living with a rare disease,1.
Calls upon Member States to strengthen health systems, notably in terms
of primary health care, in order to provide universal access to a wide range of healthcare services that are safe, of quality, accessible, available and affordable, timely, andclinically and financially integrated, which will help to empower persons living witha rare disease in addressing their physical and mental health needs to realize their
human rights, including their right to the highest attainable standard of physical and21-19154

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mental health, to enhance health equity and equality, end discrimination and stigma,
eliminate gaps in coverage and create a more inclusive society;2.
Encourages Member States to adopt gender-sensitive national strategies,
action plans and legislation, to contribute to the well-being of persons living with arare disease and their families, including on the protection and en joyment of their
human rights, consistent with their obligations under international law;3.
Also encourages Member States to address the root causes of all forms of
discrimination against persons living with a rare disease, including throughawareness-raising, the dissemination of accurate information on rare diseases andother measures, as appropriate;
4.
Emphasizes the important role of cultural, family, ethical and religious
factors, including the key role played by religious leaders in the treatment, care andsupport of persons living with a rare disease;5.
Encourages Member States and relevant United Nations agencies tocollect, analyse and disseminate disaggregated data on persons living with a raredisease, including by income, sex, age, race, ethnicity, migration status, disability,
geographical location and other characteristics relevant in national contexts, whereapplicable, to identify discrimination and to assess progress towards the improvementof the status of persons living with a rare disease;6.
Encourages Member States to foster the creation of networks of experts
and multidisciplinary specialized expert hubs, inter alia, for rare diseases and toincrease support for research, by strengthening international collaboration andcoordination of research efforts and the sharing of data, while respecting its
protection and privacy;
7.
Urges Member States to implement, as appropriate, national measures toensure that persons living with a rare disease are not left behind, recognizing that
persons living with a rare disease are often disproportionally affected by poverty,
discrimination and lack of decent work and employment, and that they may requireassistance in order to enjoy equal access to benefits and services, notably in the fields ofeducation, employment and health, and to promote their full, equal and meaningful
participation in society, and to commit to working towards the social integration andphysical and mental well-being of persons living with a rare disease and their families
and caregivers without any discrimination;
8.
Fu rther urges Member States, United Nations agencies and otherstakeholders, in consultation with persons living with a rare disease and their families,
including through their representative organizations, to design and implement policies
and programmes, to share experiences and best practices with the aim of fulfilling the rights
of all persons living with a rare disease, and to ensure that the implementation of the2030 Agenda for Sustainable Development 7 is inclusive of and accessible to persons
living with a rare disease;9.
Affirms that all persons, including those living with a rare disease, andespecially children, have the right to education and lifelong learning opportunities on
the basis of equal opportunity and non-discrimination, and urges Member States toensure full and equal access to education and lifelong learning opportunities for
persons living with a rare disease on an equal basis with others;__________________
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10. Urges Member States to implement effective programmes to promote mental
health and psychosocial support for persons living with a rare disease, and to promote
policies and programmes that enhance the well-being of their families and caregivers;
11. Calls upon Member States to accelerate efforts towards the achievementof universal health coverage by 2030 to ensure healthy lives and promote well -being
for all persons, including those persons living with a rare disease all throughout thelife course, and in this regard re-emphasizes the resolve:(a) To progressively cover persons living with a rare disease with quality
essential health products, health services and quality, safe, effective, affordable andessential medicines, diagnostics, and health technologies, with a view to covering all
persons living with a rare disease by 2030;(b) To stop the rise and reverse the trend of catastrophic out -of-pocket healthexpenditure by providing measures to ensure financial risk protection and eliminate
impoverishment due to health-related expenses by 2030, with special emphasis on
persons living with a rare disease;
12. Encourages Member States to take appropriate steps to provide affordable,
accessible and good-quality care facilities for children and other dependants livingwith a rare disease and measures promoting the equal sharing of household
responsibilities between adult members of the household, recognizing, reducing andredistributing women’s and girls’ disproportionate share of unpaid care and domestic
work when a member of the family lives with a rare disease, and fully engaging men
and boys as agents and beneficiaries of change and as strategic partners and allies inthis regard;
13. Also encourages Member States to promote access to full and productive
employment and decent work, along with appropriate measures for financial inclusion
for persons living with a rare disease and their families by addressing challenges inaccess to, retention of and return to employment, inter alia, through the creation ofsuitable working conditions for persons living with a rare disease and their families,
expanding flexible working arrangements, including through the use of new
information and communications technologies, and providing and/or expanding leave
arrangements, such as sick leave and caregiver’s leave, and adequate social security
benefits for both women and men, taking appropriate steps to ensure that they are notdiscriminated against when availing themselves of such benefits;
14. Further encourages Member States to eliminate barriers faced by persons
living with a rare disease and their families in accessing water, sanitation and hygiene,
including physical, institutional, social and attitudinal barriers, and to promote
appropriate measures in cities and other human settlements that facilitate such accessfor persons living with a rare disease and their families, on an equal basis with others,
in both rural and urban areas;
15. Decides, considering the multifaceted nature of the challenges faced bypersons living with a rare disease, to consider the issue of persons living with a raredisease at its seventy-eighth session, under the item entitled “Social development”.
53rd plenary meeting
16 December 2021

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