The NGO Committee for Rare Diseases at the United Nations, New York

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1 The NGO Committee for Rare Diseases at the United Nations, New York RDI Annual Meeting, Edinburgh 25 May 2016 A Committee of CoNGO 1

2 NGO Committee for Rare Diseases, UN, NY Update on the Committee Why the United Nations? Next steps RDI members role Q&A 2

3 NGO Substantive Committee for Rare Diseases A multi-stakeholder, inclusive, global ecosystem centered around the issue of rare diseases: * To increase visibility of rare diseases at the global level * To connect NGOs interested in rare diseases and their partners through a global platform * To elevate rare diseases as a global public health priority * To fight discrimination against people living with rare diseases worldwide 3

4 NGO Substantive Committee for Rare Diseases at the United Nations, NY Bringing NGO expertise to the UN NGO Substantive Committee on ageing, mental health, sustainable development, spirituality, migration, education NGO Substantive Committee for Rare Diseases NGO Substantive Committee on the Status of the Women, the Family, Narcotics, Indigenous Communities 4

5 Introducing the Committee: Composition and Members Regular Members NGOs in consultative status with ECOSOC NGOs in consultative status with other UN bodies than ECOSOC (e.g. WHO, DPI, etc) Associate Members Observer Members All other NGOs, governments, patient groups, academic institutions or civil society organisations / Non-profit only All for-profit undertakings, e.g. private sector organisations Supporter Members Individual Members People actively working for the benefit of people living with rare diseases, or with a noted political or academic expertise on rare diseases 5

6 The Committee exists! October 2015 March 2016 April 2016 November 2016 Accepted as a CoNGO Committee By-laws approved by CoNGO president 6 Establishing contacts within UN and member states Inaugural meeting

7 Why are the United Nations the right platform for action? The right place As a driver of a strong public health agenda, of developments in science and of human rights for all. 7

8 Why are the United Nations the right platform for action? at the right time. In November the UN adopted its 2030 Agenda for Sustainable Development, including the adoption of the 17 Sustainable Development Goals (SDGs). There is a clear alignment of a number of goals with RD: 8

9 Development Disability Social inclusion Science Innovation Social services NGO Committee for Rare Diseases Accessibility Universal Health Coverage Access to medicines Children Gender 9

10 Proposed Objectives and Activities * Collect, share and disseminate up-to-date information and research on the global dimensions of rare diseases from a holistic point of view in the UN * For example through State of the Art and thematic reports * Raise the profile of people living with rare diseases worldwide, * Particularly through dedicated events (e.g. conferences, workshops, etc) * Call for and support the recognition of rare diseases as a priority in the areas of public health, research, medical care, social care and integration, both at the international and national levels * To see rare diseases more recognised and embedded across all levels of the UN s work and the UN system, such as in reports and resolutions 10

11 The road ahead: next steps * Continue to build the Committee * Continue to lobby at UN level and with UN member states for support * Preparations for the inaugural meeting in November 11

12 Where do RDI members stand? * RDI members will be automatically represented through RDI * RDI will serve as the primary organ representing all patients across all diseases and all countries within the Committee * This falls under RDI s objective to to advocate for rare diseases as an international public health priority * RDI will consult with members to ensure members positions are taken forward where appropriate * There will be scope for members to participate directly in their capacity as RDI members 12

13 How else can RDI members contribute? * Lobbying your national authorities to secure their support: * For the inaugural meeting 8 November 2016 * Moving forward with the Committee 13

14 Thank you! Any questions? 14

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