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December 01 2016

NGO Committee for Rare Diseases (UN)


The NGO Committee for Rare Diseases, a UN Consultative Committee representing Civil Society has been inaugurated at the “Global Gathering for Rare Diseases” on November, 11th 2016 at th United Nations Headquarters in New York. It “brings together knowledge and experts to promote rare diseases as a priority in global health, research and social and medical care“. It was initiated by Ågrenska Foundation and EURORDIS – Rare Diseases Europe, the Founding Members.

Objectives are:

  • To increase visibility of rare diseases at the global level
  • To extend and share knowledge about rare diseases and their unmet needs
  • To connect NGOs interested in rare diseases and their partners within a global platform
  • To promote international, multi-stakeholder collaboration and actions for rare diseases
  • To align rare diseases as a global priority in public health, research and medical and social care policies

There are several Membership possibilities, Regular is NGOs with a consultative status with ECOSOC (UN Economic and Social Council). Other memberships include: Associate Members, Supporter Members (private sector), Individual and Observer Members.

Read the Press Release here

All information and contact for membership here

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