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

Video

Speech

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

Video

3. Rare Diseases: A Common Cause at the Global Level

Mr. Anders Olauson, Chairman, Ågrenska

Video

Presentation slides

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)

Video

Presentation slides

Speech

+ Mr. Terkel Andersen, President of the Board of Officers, EURORDIS-Rare Diseases Europe; Chairman of the Board, Danish Hemophilia Society

Video

Presentation slides

Speech

+ Prof. Min-Chieh Tseng, Founder, Taiwan Foundation for Rare Disorders; Dean, College of Social Sciences, National Taipei University

Presentation slides

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

        Video

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

Video

Presentation slides

+ Mr. Paul Melmeyer, Associate Director of Public Policy, National Organization for Rare Disorders (NORD)

The case of North America

Video

Presentation slides

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

Video

Presentation slides

+ Ms. Irina V. Myasnikova, President, Interregional Public Organisation « Help for Patients with Cystic Fibrosis »; Co-Chair, All-Russia Patients Union  

The case of Russia

Video

Speech

+  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

Video

+  Ms. Hawa Dramé, Founder, Fondation International Tierno et Mariam (FITIMA), Burkina Faso and Guinea 

The case of Africa

Video

Presentation slides

+  Ms. Yukiko Nishimura, President, ASrid (Japanese Advocacy Service for Rare and Intractable Diseases)

The case of Japan

Video

Presentation slides

+  Ms. Rachel Yang, Director of International Affairs, Chinese Organization for Rare Disorders (CORD)

The case of China

Video

Presentation slides

+  Ir Lee Yee Seng, President, Malaysia Lysosomal Diseases Association

The case of Malaysia

Video

Presentation slides

+ Ms. Megan Fookes, Founder, Rare Voices Australia; Council Member, Rare Diseases International

The case of Australia

Video

Presentation slides

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)

Video

Presentation slides

Mr. Alain Weill, President of the Board, World Federation of Hemophilia (WFH)

Video

Presentation slides

+ in conversation with Ms. Vidhya Ganesh, Deputy Director, Programme Division, United Nations Children’s Fund (UNICEF)

Video

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)

Video

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)

Video

Presentation slides

+ Dr. Nata Menabde, Executive Director, WHO Office at the United Nations, New York  

Video

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

Video

Speech

Ms. Gunilla Jaeger, Psychologist, Ågrenska

Education

Video

Presentation slides

Daniela Bas, Director, Division for Social Policy and Development (DSPD), UN Department of Economic and Social Affairs(DESA)

Employment, inclusion and poverty

Video

Tenu Avafia, Human Rights, Law and Treatment Access, HIV, Health and Development Group, United Nations Development Programme (UNDP)

A Holistic Perspective

Video

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? 

Video

Presentation slides

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? 

Video

Presentation slides

+ Ana Rath, Director, INSERIM US14-OrphaNet

OrphaNet: How Can International Classification of Rare Diseases, International Encyclopedias and Resource Listings Enhance Research and Clinical Excellence?

Video

Presentation slides

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?

Video

Presentation slides

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

Video

Founding Act

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

Video