About CoNGO


About Rare Diseases



The inauguration of the NGO Committee for Rare Diseases that took place at the United Nations Headquarters in New York on 11 November 2016, brought together 100 participants from patient organisations, academia, civil society, United Nations agencies and industry, as well as more than 1,600 followers via the live-stream online. The event marked the first time that rare diseases receive, at long last, proper consideration as a global public health priority for action within the United Nations. One of the main objectives of the event was to establish the synergies between rare diseases and the 2030 Agenda: the UN Sustainable Development Goals (SDGs). This report acts as a summary of the matters discussed and the conclusions reached during the inauguration meeting, a highlight of which is the common call for global action on rare diseases.

The NGO Committee for Rare Diseases is a substantive committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO). It brings together knowledge and experts to progress towards greater recognition of rare diseases as a global priority in the fields of health policy, research and social and medical care. The goal of the NGO Committee on Rare Diseases is to bring visibility and understanding of rare diseases to the United Nations, a platform where they have received little attention until now.

ICORD is very pleased to announce this statement on rare diseases and the development agenda, presented by Helen Clark, Administrator of the United Nations Development Programme, to the ICORD conference in Cape Town, South Africa, on 20 October 2016. It is very significant as the first official statement from such a high level in global health and development affairs, about the needs of rare diseases.


Meeting Documents