Resolução A/RES/76/132

Addressing the challenges of persons living with a rare disease and
their families

Through this Resolution, the 193 Member States of the UN urged all countries in the world to strengthen their health systems, especially in terms of primary health care, to provide universal access to a wide range of services that are safe, quality, accessible, affordable, affordable, timely, and clinically and financially integrated. In this way, it is believed that people living with a rare disease will be empowered to address their needs and realize their human rights, including the right to the highest attainable physical and mental health standards. Thus, the aim is to improve equity in health and promote equality, end discrimination, and stigma, eliminate gaps in coverage and create a more inclusive society.

The Resolution also encourages Member States to adopt national strategies, action plans, and legislation to contribute to the well-being of people living with rare diseases and their families, including protecting and enjoying their human rights under its obligations under international law.

Through the Resolution, Member States are encouraged to address the root causes of discrimination against people living with rare diseases through awareness-raising actions and disseminating accurate information about these, among other measures. It also emphasizes the critical role of cultural, familial, ethical, and religious factors (including the vital role of religious leaders) in treating, caring for, and supporting people living with a rare disease.

The Resolution also highlights the importance of an inclusive and egalitarian quality education. It adds that non-discriminatory continuing education opportunities are essential for full, equal, and meaningful participation in all social, cultural, political, and economic aspects. It recognizes that children living with a rare disease, in particular, can face multiple challenges in accessing quality education due to problems with the accessibility of facilities and the use of teaching methods that are not adapted to their realities, among others.

The resolution also recognizes the need to encourage innovation. It highlights its positive contribution to promoting social cohesion, reducing inequalities, and expanding opportunities for all, including people living with rare diseases and others who are even more vulnerable. In this sense, it recognizes the need to support, streamline and increase attention to studies on rare diseases.

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