Our President, Dawn Ireland, was a guest of Rare Diseases International and EURORDIS at the High Level Side-Event – UN Political Forum on Sustainable Development at the UN last week. The meeting happened to include the Queen of Spain! How honored CDHi is to participate in something so incredible for the better health of all rare disease patients.
The event, organised on the margins of the HLPF, is co-hosted by Brazil, Spain and Qatar – the Core Group of Member States supporting 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.
About the Event
The Side-Event is a major milestone for the rare disease community at the United Nations. It will be an opportunity to discuss the proposed UN General Assembly Resolution as well as support for the initiative.
The over 300 million persons living with a rare disease around the world and their families face many common challenges that have an impact on every aspect of life. Challenges include integration in education systems, difficulty accessing stable employment, greater risk of financial hardship, barriers accessing appropriate healthcare, as well as exclusion and discrimination. These challenges have only been exacerbated by the unfolding pandemic and will not diminish unless specific attention is paid.
Within the context of the Sustainable Development Goals (SDGs), we urge the countries of the UN to address the needs of persons living with a rare disease as an opportunity to build more inclusive societies, realize the promise to “leave no one behind” expressed in Agenda 2030, and learn from the lessons of the COVID-19 pandemic.