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.

>> Watch the Second High-Level Event of the NGO Committee for Rare Diseases, which took place at the United Nations, New York, in February 2019.

>> 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: 07/03/2019
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases