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. In this line, the NGO Committee has defined as a general objective to work towards the adoption of a UN General Assembly Resolution on Addressing Holistically the Challenges of People Living with a Rare Disease, which would be a remarkable step ahead towards global recognition and actions towards the improvement of their overall life conditions in all Member States. To move towards this the NGO Committee has organised high-level policy events at the United Nations Headquarters as well as different side-events, participated in a number of UN conferences, and responded to relevant consultations of the different UN bodies and agencies. It will continue to do so, as well as expanding its membership in order to promote multi-stakeholder collaboration and actions for rare diseases within the UN system.

>> 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: 23/07/2019
 
 
Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen KrankheitenRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases