Rare Diseases communities are progressively working to create a favourable environment to the issue of rare diseases within the United Nations system and include advocacy messages in different forums through the NGO Committee for Rare Diseases and its memberº including EURORDIS and RDI.

One such forum at the UN is the Conference of State Parties to the Convention on the Rights of Persons with Disabilities (CRPD). The agenda of disability has become very influential over the last 10 years since the drafting of the Convention, and there are a high number of non-governmental organisationº  UN agencies and Member States paying attention to this.