This event forms part of the broad strategy of the NGO Committee to work towards the achievement of the relevant Sustainable Development Goals that will contribute to better lives for the community of people living with a rare disease. It aims to present the progress achieved in the last 2 years within the human rights, health, and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases.
The meeting will take the form of an all-day roundtable bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority within the United Nations.
The call to integrate rare diseases within the UN Agenda was first issued at the first high-level event, which took place on November 11th 2016 at the United Nations in New York under the title ‘Global Gathering for Rare Diseases’. You may refer to the report of this event. On that occasion, the link between the rare diseases community’s goals and the UN SDGs 2030 Agenda was established and recognised by the main UN agencies and bodies (WHO, UNICEF, UNDP, ECOSOC), which opened the door to broader awareness of the issue and potential partnerships at global level.