UN Call for Input

The Office of the United Nations High Commissioner for Human Rights (OHCHR) is calling for inputs on the protection of the human rights of Persons Living with Rare Diseases and their families and carers. The UN agency is particularly interested in receiving personal testimonies from our community, as well as resources on the human rights challenges faced by Persons Living with a Rare Disease, and articles describing obstacles to the development of treatments and therapies for rare diseases. Please follow this link to share written submissions and links: https://bit.ly/3RJGmpG

This call indicates the rare diseases community's increased visibility at the UN, and we encourage all members to share materials. Since the adoption of the UN Resolution on Persons Living with a Rare Disease, OHCHR has shown great interest in understanding the challenges faced by our community. In July, they co-hosted an event with RDI on rare diseases and gender, and have continued to engage with RDI.