The United Nations Conference on Non-Governmental Organizations (CoNGO), a United Nations (UN) advisory body representing civil society, welcomed the issue of rare diseases into its community. On 11 November, 2016, the UN inaugurated its Committee of rare diseases (NGO Committee for Rare Diseases). This is a major step that addresses the challenges posed by rare diseases on a global scale.
This accomplishment is the fruit of the persistent action of the patient associations EURORDIS and Ågrenska. They have shown the convergence of objectives specific to rare diseases with those set by the United Nations for 2030, namely the 17 Sustainable Development Goals (SDGs). They can be summed up as follows: no one should be left by the wayside, which includes the vulnerable population of patients suffering from a rare disease. In particular, the health, education, employment, gender equality, discrimination, as well as the economic and financial consequences of rare diseases correspond to concerns expressed in the objectives for the sustainable development of The United Nations.
The inaugural day brought together in New York, United Nations neighbourhoods, representatives of patient organizations from each continent, representatives of the United Nations, including the President of CoNGO, Mr. Cyril Ritchie, the Director of the Economic and Social Council Of the United Nations (ECOSOC) Dr. Navid Hanif, World Health Organization (WHO) representative Dr. Nata Menabde, and representatives of international initiatives for rare diseases, such as International Rare Diseases Research Consortium (IRDiRC), International Conference on Rare Diseases & Orphan Drugs (ICORD), International Federation of Pharmaceutical Manufacturers & Associations (IFPMA) and Orphanet, whose complementarity shows the maturity of an internationally functioning ecosystem.
This founding act was supported by the Swedish Ministry of Health and Social Affairs, the Permanent Mission of Estonia to the United Nations and the Government of the Republic of Malta, and took place under the patronage of the Queen Silvia of Sweden.
This historic event marks the first step towards explicit consideration of rare diseases in social and public health policies at global level. The UN Committee of Non-Governmental Organizations for Rare Diseases will be the catalyst for efforts to achieve the objectives of the United Nations in the specific case of the population of patients with rare diseases by recognizing and integrating their Initiatives of the United Nations.