Rare disease day

Rare Disease Day Policy Event at the United Nations

Second High-Level Event of the NGO Committee for Rare Diseases

21 February 2019

United Nations Headquarters, New York

Watch the event | About the event | Speaker presentations | Photos
Watch the Recording: Keynote Addresses, Session 2, Session 3
Watch the Recording: Session 4, Closing Session
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>> Press Release <<

Hosted by

Permanent Mission of Estonia to the United Nations

with the co-hosting of

Permanent Mission of Belgium to the United Nations

Permanent Mission of Brazil to the United Nations

Permanent Mission of Cyprus to the United Nations

Permanent Mission of France to the United Nations

Permanent Mission of Japan to the United Nations

Permanent Mission of the State of Kuwait to the United Nations

Permanent Mission of Luxembourg to the United Nations

Permanent Mission of the Republic of Malta to the United Nations

Permanent Mission of Romania to the United Nations

Permanent Mission of the Republic of Serbia to the United Nations

Permanent Mission of Spain to the United Nations

Permanent Mission of Sweden to the United Nations

Permanent Mission of Thailand to the United Nations

Permanent Mission of the United Arab Emirates to the United Nations

This event took place in the context of the broad strategy of the NGO Committee to work towards the achievement of the relevant Sustainable Development Goals that will contribute to better lives for the community of people living with a rare disease. It aimed to present the progress achieved in the last 2 years within the human rights, health, and sustainable development agendas of the United Nations system as well as present and discuss a call towards a General Assembly Resolution on rare diseases.

                               No poverty Good health and well-being Quality education Gender equality Reduced inequalities Partnerships for the goals

The meeting took the form of an all-day roundtable bringing together around 100 participants – from the international NGO community, UN agencies and national governments, academic and research institutions as well as the private sector – interested in collaborating towards the advancement of rare diseases as a global public health priority within the United Nations.

The call to integrate rare diseases within the UN Agenda was first issued at the first high-level event, which took place on November 11th 2016 at the United Nations in New York under the title ‘Global Gathering for Rare Diseases’. You may refer to the report of this event. On that occasion, the link between the rare diseases community’s goals and the UN SDGs 2030 Agenda was established and recognised by the main UN agencies and bodies (WHO, UNICEF, UNDP, ECOSOC), which opened the door to broader awareness of the issue and potential partnerships at global level.

Speaker Presentations

Opening Session: Leave no person living with a rare disease behind

The NGO Committee for Rare Diseases: working on a common cause at the global level (Anders Olauson, Chair of the NGO Committee for Rare Diseases; Chairman, of Ågrenska Foundation)

Remarks by the Host (H.E. Mr. Sven Jürgenson, Ambassador and Permanent Representative, Permanent Mission of Estonia to the United Nations)

Rare Diseases and the Sustainable Development Goals (Leslie Wade, Chief ECOSOC and Interorganizational Cooperation Branch)

Human Rights of people living with a rare disease (Andrew Gilmour, Assistant Secretary-General for Human Rights and Head of the Office of the High Commissioner for Human Rights in New York)

Universal Health Coverage for people living with a rare disease (H.E. Vitavas Srivihok, Ambassador and Permanent Representative, Permanent Mission of Thailand to the United Nations)

Remarks by Chair of the UN Group of Friends of Universal Health Coverage (H.E. Toshiya Hoshino, Ambassador and Deputy Permanent Representative, Permanent Mission of Japan to the United Nations)

Session 2: Recognising rare diseases as a policy priority: Empowering people living with a rare disease

Introduction to the session and the Rare Disease Campaign (Terkel Andersen, President of the Board of Directors, EURORDIS-Rare Diseases Europe)

A need for visibility within support systems (Lieven Bauwens, Secretary General, International Federation for Spina Bifida and Hydrocephalus; Member of Inception Executive Board NGO Committee for Rare Diseases)

Inclusion of rare diseases in scientific research (Irene Norstedt, Acting Director responsible for the Health Directorate within the Directorate-General for Research and Innovation, European Commission and Head of Unit, Innovative and Personalised Medicine Unit; Member of the International Rare Diseases Research Consortium (IRDiRC))

Session 3: Universal Health Coverage and reduction of inequalities for inclusive development

The extreme of ‘Leave no one behind’ – undiagnosed patients (William Gahl, Chair, Undiagnosed Diseases Network International (UDNI); Clinical Director, National Institutes of Health, National Human Genome Research Institute)

New opportunities to improve the diagnosis of children living with a rare disease (Simon Kos, Chief Medical Officer and Senior Director, Worldwide Health, Microsoft & member of the Global Commission on ending the Diagnostic Odyssey of Children with Rare Diseases)

The need to address the ‘Big 5’ from a lifelong perspective: healthcare, social care, school, insurance and labour (Robert Hejdenberg, Chief Executive Officer, Ågrenska Foundation)

Session 4: Ensuring inclusion and participation of people living with a rare disease through national policies and strategies

Introduction to the session (Daniela Bas, Director of Division for Inclusive Social Development, UN Department of Economic and Social Affairs (DESA), United Nations Secretariat)

Nan-Byo Strategy – Japan (Toshi Ezoe, Counsellor, Permanent Mission of Japan to the United Nations)

Implementing a national rare disease plan starting with national registry – Colombia (Germán Escobar Morales Director of Health, ProPacífico)

Establishing an APEC Rare Disease Registry Network: QUT and a framework for collaboration (Matthew Bellgard, Director of eResearch, Division of Research and Innovation, Queensland University of Technology and Chair of APEC LSIF Rare Disease Network)

Networks for applying research to diagnosis and care – Canada (Kym Boycott, Professor of Pediatrics, University of Ottawa; Care4Rare)

Rare Diseases Clinical Research Networks – United States of America (Marshall Summar, Director, Rare Disease Institute at Children’s National, Washington, D.C; Chairman of Board of Directors of the National Organization for Rare Disorders (NORD), USA)

Resource centres for rare diseases – Romania (Dorica Dan, President, RONARD (Romanian National Alliance for Rare Diseases); Member of Board, EURORDIS-Rare Diseases Europe)

Building a grassroots approach for persons living with a rare disease – Iran (Hamid. R. Edraki, Managing Director, Rare Diseases Foundation of Iran)

The case of rare diseases in China (Shuyang Zhang, Vice President of Peking Union Medical College Hospital (PUMCH), Director of Clinical Pharmacology Research Center, PUMCH)

Integration of rare diseases in the national health system – Philippines (Cynthia Magdaraog, President of the Philippine Society for Orphan Disorders, Inc. (PSOD))

Closing session

Official video statement from Mrs. Michelle Muscat, Spouse of the Prime Minister of the Republic of Malta

Official video statement from Mrs. Tamara Vucic, Spouse of the President of the Republic of Serbia



Event of the

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Photos from the Second High-Level Event of the NGO Committee for Rare Diseases:

More photos from the 2nd High Level Event of the NGO Committee for Rare Diseases

Photos by BJ Holtgrewe Media