The NGO Committee for Rare Diseases was launched on 11 November 2016 at the United Nations in New York. During this inaugural meeting, the Committee set forth its primary mission: to advocate for all people living with rare diseases worldwide. The NGO Committee gives equal consideration to the needs of all people living with a rare disease, irrespective of which rare disease they are affected by or where they live. Its Founding Act, presented at the end of the meeting, enshrines these essential values of humanism, patient-centricity and open exchange of knowledge and experience, which will guide and support all of the Committee’s future actions and endeavours.
The programme for the inaugural meeting featured presentations by leading advocates and policymakers from across the globe, which you can retrieve and consult below.
Morning Plenary
1. The United Nations and Civil Society: CoNGO and CoNGO Committees
Mr. Cyril Ritchie, President of CoNGO 2011-2018
2. Public Health in the Mandate of the United Nations Economic and Social Council
Mr. Navid Hanif, Director for ECOSOC Support and Coordination, UN Department
3. Rare Diseases: A Common Cause at the Global Level
Mr. Anders Olauson, Chairman, Ågrenska
4. How It All Started: The Contribution of the NGO Community to Advancing the Causes of Rare Diseases
+ Ms. Abbey S. Meyers, President Emeritus, National Organization for Rare Disorders (NORD)
+ Mr. Terkel Andersen, President of the Board of Officers, EURORDIS-Rare Diseases Europe; Chairman of the Board, Danish Hemophilia Society
5. A Call for Global Action Coming from Civil Society
Mr. Yann Le Cam, Chief Executive, EURORDIS-Rare Diseases Europe; Council Member, Rare Diseases International
6. Tackling Rare Diseases Internationally Through National and Regional Strategies
+ Ms. Avril Daly, Vice-President of the Board of Officers, EURORDIS-Rare Diseases Europe; Chief Executive, Retina International
The case of Europe
+ Mr. Paul Melmeyer, Associate Director of Public Policy, National Organization for Rare Disorders (NORD)
The case of North America
+ Ms. Migdalia Denis, Founder, Venezuelan Society for Pulmonary Hypertension; President, Latin American Society for Pulmonary Hypertension; Governing Board Member, International Alliance of Patients’ Organisations (IAPO)
The case of Latin America
+ Ms. Irina V. Myasnikova, President, Interregional Public Organisation « Help for Patients with Cystic Fibrosis »; Co-Chair, All-Russia Patients Union
The case of Russia
+ Dr. Hassan Vahidnezhad, Visiting Scholar scientist and research assistant , Department of Dermatology and Cutaneous Biology, Thomas Jefferson University; Representative of Rare disease foundation of Iran (RADOIR)
The case of the Middle East and Central Asia
+ Ms. Hawa Dramé, Founder, Fondation International Tierno et Mariam (FITIMA), Burkina Faso and Guinea
The case of Africa
+ Ms. Yukiko Nishimura, President, ASrid (Japanese Advocacy Service for Rare and Intractable Diseases)
The case of Japan
+ Ms. Rachel Yang, Director of International Affairs, Chinese Organization for Rare Disorders (CORD)
The case of China
+ Ir Lee Yee Seng, President, Malaysia Lysosomal Diseases Association
The case of Malaysia
+ Ms. Megan Fookes, Founder, Rare Voices Australia; Council Member, Rare Diseases International
The case of Australia
7. Tackling Rare Diseases Internationally Through Bottom-Up Diagnosis and Care Strategies
+ Mr. Lieven Bauwens, Secretary-General, International Federation for Spina Bifida and Hydrocephalus (IF)
+ Mr. Alain Weill, President of the Board, World Federation of Hemophilia (WFH)
+ in conversation with Ms. Vidhya Ganesh, Deputy Director, Programme Division, United Nations Children’s Fund (UNICEF)
Afternoon Plenary
8. How to Further Carry the Patients’ Voice at the Global Level to Deliver Change?
Ms. Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders (CORD); Council Member, Rare Diseases International (RDI)
9. The UN Sustainable Development Goals (SDGs): Implications for Health in General and Rare Diseases in Particular
+ Ms. Lauren Barredo, Manager, Thematic Group on Health, UN Sustainable Development Solutions Network (SDSN)
+ Dr. Nata Menabde, Executive Director, WHO Office at the United Nations, New York
10. Bringing the SDGs to Life: Spotlight Examples of Where the Rare Disease Community Can Make a Contribution
+ Ms. Maria Montefusco, Secretary of the Council of Nordic Cooperation on Disability, Nordic Center of Welfare and Social Issues
Disability and gender
+ Ms. Gunilla Jaeger, Psychologist, Ågrenska
Education
+ Daniela Bas, Director, Division for Social Policy and Development (DSPD), UN Department of Economic and Social Affairs(DESA)
Employment, inclusion and poverty
+ Tenu Avafia, Human Rights, Law and Treatment Access, HIV, Health and Development Group, United Nations Development Programme (UNDP)
A Holistic Perspective
11. Avenues for Global Action: Mobilising all stakeholders in the rare disease community worldwide on the road to 2030
+ Dr Christopher P. Austin, Director, National Center for Advancing Translational Sciences (NCATS); Chair, International Rare Disease Research Consortium (IRDiRC)
IRDiRC: How Can International Collaboration Accelerate Research Advancements?
+ Dr. Philip Vickers, Global Head of Research and Development, Shire on behalf of the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA)
IFPMA: How can the Pharma and Biotech Industry Help Translate Scientific Opportunities into Accessible and Affordable Treatments?
+ Ana Rath, Director, INSERIM US14-OrphaNet
OrphaNet: How Can International Classification of Rare Diseases, International Encyclopedias and Resource Listings Enhance Research and Clinical Excellence?
+ John Forman, Past-President, International Conference on Rare Diseases and Orphan Drugs (ICORD)
ICORD: How Can A Cycle of Multi-Stakeholder Conferences Stimulate Dialogue and Actions in Different Parts of the World?
12. Introducing the NGO Committee for Rare Diseases and its Founding Act « Rare Diseases and the UN Sustainable Development Goals »
Mr. Anders Olauson, Chairman, Ågrenska
13. Closing Keynote Addresses
with an official statement from H.E. Prime Minister Joseph Muscat and the Government of Malta on the eve of the Maltese Presidency of the Council of the European Union in 2017