Today at the United Nations, there will be the Inaugurating the NGO Committee for Rare Diseases
You can watch the event live in the link below
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.
The inauguration event, the ‘Global Gathering for Rare Diseases’, takes place under the patronage of Queen Silvia of Sweden and CoNGO, as well as with the support of several national governments.
The launch event brings together over 30 leaders from the international rare disease community, including heads of rare disease patient organizations from around the world and international rare disease federations (Australia, Burkina Faso and Guinea, Canada, China, Denmark, France, Iran, Ireland, Japan, Malaysia, New Zealand, Russia, Sweden, Taiwan, the US and Venezuela), as well as experts from UN bodies and the European Union.