Other work I’ve been involved with, in partnership with rare disease colleagues around the world, has led to a Committee for Rare Diseases within the UN’s Conference of NGOs in consultative relations with the UN. While not quite a full committee of the UN (that is another step to aim for) it is a significant step forward for the recognition of the collective impacts of rare diseases being noticed as a significant public health issue. The inaugural meeting of the CfRD was held on 11 November 2016 in New York. Eurordis and the Agrenska Foundation in Sweden, led much of the preparatory work to set up this committee.
There was a certain irony for me when presenting at the inaugural meeting, as there was for presenters from Australia, Canada and some other countries, to know that our own governments have studiously avoided any significant commitment to specific policy and services for rare diseases, compared to the very strong commitments made in Europe, Japan, Taiwan, Korea, and elsewhere. There is a detailed report about the inaugural meeting, prepared by me and posted on the ICORD website.