RARE DISEASES AND SDG 5
The responsibility for caring for people with rare diseases falls disproportionately on women, particularly mothers, as rare diseases predominantly affect young children. Their time and efforts to provide unpaid care and housework, as well as the burden this places on their careers and activities (even forcing them to leave their jobs, with straightforward implications for their future income, pensions, and social payments), as well as their economic independence in general), is often underestimated and unrecognized.
Enshrined in the Charter of the United Nations is the principle of equality between men and women. Sadly, discrimination against women and girls remains an issue that needs a stern response.
Research has proven that women with a rare disease face more rejection when seeking a diagnosis, and their pain is less seriously considered than men’s. But not only that, when a family member is affected by a rare disease, the primary caregiver role is more often assumed by the mother, leading to a standstill in professional life and inducing high levels of stress and physical and emotional exhaustion.
In advocating for timely treatment and appropriate social care, the NGO Committee on Rare Diseases aims to empower women and girls everywhere.
Fonte: NGO Committee for Rare Diseases
Gender equality is a fundamental human right and the foundation for building a peaceful, prosperous, and sustainable world. The effort to achieve SDG 5 is transversal to the entire 2030 Agenda and reflects the growing evidence that gender equality has multiplier effects on sustainable development.
Many advances in ensuring better living conditions for women and girls are an essential legacy of the MDGs. The Sustainable Development Goals aim to intensify these achievements, not only in the areas of health, education, and work, but especially in combating gender-based discrimination and violence and promoting the empowerment of women and girls so that they can act emphatically in promoting the development of sustainable, through participation in politics, the economy, and various areas of decision-making.
Sustainable development will not be achieved if the tangible and intangible barriers that prevent the entire fostering and exercise of the capabilities of half the population are not eliminated.
Get to know SDG 5 and its targets
|5.1||End all forms of discrimination against all women and girls everywhere|
|5.2||Eliminate all forms of violence against all women and girls in the public and private spheres, including trafficking and sexual and other types of exploitation|
|5.3||Eliminate all harmful practices, such as child, early and forced marriage and female genital mutilation|
|5.4||Recognize and value unpaid care and domestic work through the provision of public services, infrastructure and social protection policies and the promotion of shared responsibility within the household and the family as nationally appropriate|
|5.5||Ensure women’s full and effective participation and equal opportunities for leadership at all levels of decision-making in political, economic and public life|
|5.6||Ensure universal access to sexual and reproductive health and reproductive rights as agreed in accordance with the Programme of Action of the International Conference on Population and Development and the Beijing Platform for Action and the outcome documents of their review conferences|
|5.a||Undertake reforms to give women equal rights to economic resources, as well as access to ownership and control over land and other forms of property, financial services, inheritance and natural resources, in accordance with national laws|
|5.b||Enhance the use of enabling technology, in particular information and communications technology, to promote the empowerment of women|
|5.c||Adopt and strengthen sound policies and enforceable legislation for the promotion of gender equality and the empowerment of all women and girls at all levels|
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