Qatar Helped Facilitate it, a UN Resolution on the Rights of Persons with Rare Disease and Their Families

Human Rights

The United Nations General Assembly’s Third Committee approved unanimously a draft resolution on “Addressing the challenges of persons living with a rare disease and their families.” The State of Qatar, Spain, and Brazil contributed in facilitating negotiations on the resolutions articles.

Member states called upon all countries to strengthen their health systems, notably in terms of primary health 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, and clinically and financially integrated, which will help to empower persons living with a 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.

The resolution encouraged member states to adopt 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.

It also encouraged 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. It emphasized 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.

It affirmed 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, and recognizing that, in particular, children living with a rare disease may face multiple challenges in accessing quality education owing to the inaccessibility of facilities and non-adapted teaching methods, among others. The resolution also recognized the need to foster innovation and the positive contribution that innovation can make in promoting social cohesion, reducing inequalities and expanding opportunities for all, including persons living with a rare disease and the most vulnerable people, and in that regard recognizing the need to support, streamline and increase attention to research on rare diseases.

HE Ambassador and Deputy Permanent Representative to the United Nations Maria Bassols Delgado said that the State of Qatar, Brazil, and Spain are convinced of the importance of addressing the challenges faced by 300 million around the world who are suffering from rare disease, in terms of integrating in their respective societies. She added that the three countries wanted to shed light on this marginalized segment of the population.

 

Source: Ministry of Foreign Affairs