Leave no one behind
The main purpose of the NGO Committee for Rare Diseases is to bring visibility and understanding about rare diseases to the United Nations, a platform where they have received little attention until now.
This is to ensure that no one person living with a rare disease is left behind, and in turn serves 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 NGO Committee for Rare Diseases will serve as an advocacy platform for the issue of rare diseases, bringing together a diversity of stakeholders such as the international NGO community, major UN agencies, national governments, the academic and scientific world and the private sector. The committee will primarily work to promote collaboration between these constituents.
In collecting and sharing accurate information about rare diseases and the associated challenges and unmet needs, the NGO Committee for Rare Diseases will serve as an information resource for all constituents within the UN system.
Encourage & Support UN Action
The United Nations has been a driver of public health, social development and fundamental human rights for over 70 years. The NGO Committee for Rare Diseases will encourage and support action through the UN, to elevate rare diseases as a priority within global public health, research, medical care, social care and social integration priority. This, in turn, will serve to advance the cause of people living with rare diseases worldwide, regarding inequalities in access to treatment and care.