People with rare diseases call for recognition and visibility within the UN system

In the context of the actions and delivery for sustainable development, a Side-Event to the UN High-Level Political Forum on Sustainable Development (HLPF) was held on 7 July in New York. The event was co-hosted by Spain, Brazil and Qatar, the Core Group of Member States promoting the call for a UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families, together with the NGO Committee for Rare Diseases, Rare Diseases International and EURORDIS.

The event was attended by over 300 participants from 61 countries across the globe that discussed how addressing the challenges faced by persons living with a rare disease advances the UN 2030 Agenda and the commitment to ‘Leave No One Behind’.

The proposed UN Resolution promotes full participation and inclusion in society of all people, including those living with a rare disease, and highlights the need for international collaboration, and improved awareness and visibility within the UN system, programmes and agencies.

About the global Rare Disease Community

Currently, there are 300 million persons worldwide living with one of the over 6000 identified rare diseases. These people are facing common challenges such as difficulty integrating into educational systems, greater risk of facing financial hardship and job insecurity, inadequate care pathways, as well as exclusion and discrimination, problems that have been increased because of the Covid-19 pandemic.

In this context, people with rare diseases are calling for recognition and visibility within the UN system. The side-event demonstrates how bold steps can address the challenges experienced by families around the world, and help build more inclusive societies for all.