The NGO Committee for Rare Diseases aims to promote multi-stakeholder collaboration and actions for rare diseases within the United Nations system.
It is established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO) and acts as a forum of interested parties such as NGOs from the field of rare diseases and beyond; United Nations bodies and agencies; as well as individual experts.
« Efficient and effective action for rare diseases depends on a coherent overall strategy for rare diseases mobilising scarce and scattered resources in an integrated and well recognized way, and integrated into a common effort »
The European Commission – 2008
« Rare disease policies require a global approach in addition to the national one. It is time for public authorities to consider rare diseases as a national as well as international public health priority »
Yann Le Cam (EURORDIS-Rare Diseases Europe) and Paloma Tejada (Rare Diseases International) – 2010
« Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including … medical care and necessary social services, and the right to security in the event [of] … sickness, disability, or other lack of livelihood in circumstances beyond his control »
The Yukiwariso Declaration – 2012
« Having a rare disease affects all aspects of life: experiences from thousands of families worldwide tell the same story. All areas of life – healthcare, social services, schools, insurances and labour – must work together. Life is holistic, and so must be the care and support. Working together at the United Nations will make this possible. »
of genetic origin
6-8% of the