The United Nations has created a Non Government Organisation Committee for Rare Disease and held its inaugural meeting in November which was transmitted live throughout the world by webinar.
Kamal Shah of aHUS India, and a key contributor to the aHUS alliance’s activities, was invited by EURORDIS to speak about aHUS in a short video.
The video is now available to see at the link here , and hear what Kamal’s comments to the UN’s NGO committee.
11 Nov 2016 NGO Committee for Rare Diseases (pdf) : The Global Gathering for Rare Diseases: Inaugurating the NGO Committee for Rare Diseases (CfRD)
NGO Committee for Rare Diseases Visit the organization’s website to learn more: UN Resolution on Persons Living with a Rare Disease and their Families
