Addressing the Challenges of Persons Living with a Rare Disease and Their Families

A/RES/78/173View PDF

Who adopted this document and its mandates?

A Resolution of the General Assembly, under agenda item 24 Social development, published in 2023.

What other versions does this mandate have?

3 versions · 2022–2025

This is an older version — the most recent is A/RES/80/176

Year	Symbol	Title	Word length	Text similarity
2025	A/RES/80/176	Addressing the challenges of persons living with a rare disease and their families	3,294	87%Compare
2023	A/RES/78/173	Addressing the challenges of persons living with a rare disease and their families	2,935	78%Compare
2022	A/RES/76/132	Addressing the challenges of persons living with a rare disease and their families	2,329	–

What subjects does this mandate have?

4 subjects

Anti-Discrimination Measures Chronic Diseases Health Services Report Preparation

What’s in this document?

25 operative paragraphs

Calls upon Member States to strengthen health systems, and referral systems between primary health care and other levels of care, in order to provide universal access to a wide range of health-care services that are safe, of quality, accessible, available and affordable, timely, clinically and financially integrated, and gender-responsive, with full respect for human rights, which will help to empower persons living with a rare disease, whether genetic or acquired, including those with rare cancers, rare infections and rare allergic conditions, as well as those with an undiagnosed 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 and mental health, to enhance health equity and equality, end discrimination and stigma, eliminate gaps in coverage and create a more inclusive society;

Encourages Member States to adopt gender-sensitive national strategies, action plans and legislation, to contribute to the well-being of persons living with a rare disease and their families, including on the protection and enjoyment of their human rights, consistent with their obligations under international law;

Also encourages Member States to address the root causes of all forms of discrimination against persons living with a rare disease, including through awareness-raising, the dissemination of accurate information on rare diseases and other measures, as appropriate;

Emphasizes the important role of cultural, family, ethical and religious factors, including the key role played by religious leaders in the treatment, care and support of persons living with a rare disease;

Encourages Member States and relevant United Nations agencies to collect, analyse and disseminate disaggregated data on persons living with a rare disease, including by income, sex, age, race, ethnicity, migration status, disability, geographical location and other characteristics relevant in national contexts, where applicable, to identify discrimination and to assess progress towards the improvement of the status of persons living with a rare disease;

Encourages Member States to foster the creation of networks of experts and multidisciplinary specialized expert hubs, inter alia, for rare diseases, to promote correct and timely diagnoses and care coordination plans, and to increase support for research, by strengthening international collaboration and coordination of research efforts and the generation and sharing of data, while respecting data protection and privacy;

Also encourages Member States:

To develop national sustainable programmes for undiagnosed diseases, aligned with national efforts to achieve universal health coverage, to enable rapid and equitable access to diagnosis and social support;

To structure and coordinate, at the national and international levels, knowledge on the subject of rare diseases, and information-sharing to optimize the use of existing resources and facilitate access for all persons with an undiagnosed rare disease, while acknowledging the need to support developing countries in building expertise and in developing local and regional manufacturing capacities for health products and technologies;

To promote the participation of persons living with a rare disease and other relevant stakeholders in the governance of undiagnosed disease programmes and international networks to adequately address the priorities of persons living with an undiagnosed rare disease and contribute to improving the quality of health care;

To promote, through existing initiatives, ethical and responsible international data-sharing to support diagnosis, increase clinical collaboration, facilitate research and accelerate treatment of undiagnosed and rare conditions;

To facilitate collaboration among national authorities overseeing drug development cycles and clinical trials for treatments for persons living with a rare disease;

Urges Member States to implement, as appropriate, national policies and measures to ensure 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 require assistance in order to enjoy equal access to benefits and services, notably in the fields of education, employment and health, and to promote their full, equal and meaningful participation in society, and to commit to working towards the social integration and physical and mental well-being of persons living with a rare disease and their families and caregivers without any discrimination;

Urges Member States, United Nations agencies and other stakeholders, 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 the 2030 Agenda for Sustainable Development⁷ is inclusive of and accessible to persons living with a rare disease;

⁷Resolution 70/1.

Affirms that all persons, including those living with a rare disease, and especially children, have the right to education and lifelong learning opportunities on the basis of equal opportunity and non-discrimination, and urges Member States to ensure full and equal access to education and lifelong learning opportunities for persons living with a rare disease on an equal basis with others;

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;

Calls upon Member States to accelerate efforts towards the achievement of universal health coverage by 2030 to ensure healthy lives and promote well-being for all persons, including those persons living with a rare disease, as well as those with an undiagnosed rare disease, all throughout the life course, and in this regard re-‍emphasizes the resolve:

To progressively cover persons living with a rare disease, and those with an undiagnosed rare disease, with quality essential health products, health services, including adequate preventive measures such as newborn screening, and quality, safe, effective, affordable and essential medicines and therapies, diagnostics, with the particular aim of shortening and easing the pathway to a diagnosis and treatment for persons living with a rare disease, health technologies, and strengthened primary health care, referral pathways, multidisciplinary care coordination plans, increased registration efforts, and access to specialized care, with a view to completely covering all persons living with a rare disease by 2030;

To reverse the trend of catastrophic out-of-pocket health expenditure, which carries psychosocial and economic consequences for both persons living with a rare disease and their families, 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;

Encourages Member States to take appropriate steps to provide affordable, accessible and good-quality care facilities for children and other dependants living with a rare disease and measures promoting the equal sharing of household responsibilities between women and men, including all adult members of the household, recognizing, reducing and redistributing 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 in this regard;

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 in access to, retention of and return to employment, inter alia, through the creation of suitable 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 not discriminated against when availing themselves of such benefits;

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 access for persons living with a rare disease and their families, on an equal basis with others, in both rural and urban areas;

Invites Member States, in collaboration with non-governmental organizations, civil society organizations and other relevant stakeholders, to raise awareness on the specific challenges and needs faced by persons living with a rare disease and their families, through national campaigns, educational programmes and information dissemination, with the goal of promoting greater understanding and global solidarity;

Invites the Secretary-General, in close collaboration with the Director General of the World Health Organization, to inform the General Assembly about the implementation of the present resolution during its eightieth session;

Decides, considering the multifaceted nature of the challenges faced by persons living with a rare disease, to consider the issue of persons living with a rare disease at its eightieth session, under the item entitled “Social development”.

Who adopted this document and its mandates?

What other versions does this mandate have?

What subjects does this mandate have?

What’s in this document?

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