NGO Committee for Rare Diseases

NGO Committee for Rare Diseases logo

The NGO Committee for Rare Diseases (United Nations, New York) is a Committee established under the umbrella of the Conference of NGOs with Consultative Status to the United Nations’ Economic and Social Council (CoNGO). The NGO Committee was founded by the Ågrenska Foundation and EURORDIS – Rare Diseases Europe in order to bring visibility to rare diseases on a global level.

One of the central purposes of the NGO Committee for Rare Diseases shall be to bring better visibility and greater political recognition to rare diseases within the United Nations, a global forum where they have received comparatively little attention until now. The Committee shall strive to ensure that no one person living with a rare disease is left behind, and in turn to advance efforts to achieve the UN’s Sustainable Development Goals in the areas of health and well-being, poverty, education, gender equality, inequalities and partnerships.

The need for stronger international collaboration in support of rare diseases is being increasingly recognised, and has to date translated into practice in the field of medical research (through IRDiRC, the International Rare Diseases Research Consortium), in connecting the global rare disease patient community people globally through Rare Diseases International (RDI), RareConnect and Rare Disease Day and also at the industry level through the creation of a dedicated working group on rare diseases within international trade body IFPMA.

However, much remains to be done on a global scale. There is still a need for a genuine international platform and attention at the UN level to connect these current efforts, strengthen the community and increase visibility of rare diseases within global policy.

Read the report from the inauguration of the NGO Committee for Rare Diseases, which took place in New York in November 2016.

 

 

 

Page created: 08/07/2016
Page last updated: 12/06/2017
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases