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Office of the High Commissioner for Human Rights
Over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and their families deserve improved visibility and recognition within the 2030 Agenda.
This formal side-event to the 2022 HLPF aims to showcase how women and girls living with a rare disease are disproportionately discriminated against - either as persons with a rare disease themselves, or as parents or caregivers. Living with a rare disease, and the lack of knowledge and expertise that is associated with it, represent an additional factor for intersectional discrimination against women and girls, and a barrier to the fulfilment of SDG 5. Furthermore, evidence shows that the additional discrimination against women and girls who live with a rare disease also has dramatic consequences for both their health and economic condition. Indeed, there is substantial delays in getting accurate diagnosis for women and girls compared to men and boys with the same rare disease, and women are at greater risk of impoverishment because the primary unpaid care role is most often assumed by women.
In this context, the rare disease civil society community (represented by the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS-Rare Diseases Europe), with the support of Spain, proposes to discuss how recognizing and addressing this additional factor for intersectional discrimination faced by women and girls can promote Agenda 2030 and the recovery from the COVID-19 pandemic, while supporting the implementation of the principles enshrined in the UN Resolution on addressing the challenges of PLWRD and their families.
Register here for the side-event
