Logotipo do dia internacional da sindrome de Down - World Down Syndrome Day, em vermelho e azul


United Nations Headquarters

21 March 2014, Friday

Registration Open – FREE OF CHARGE – http://www.worlddownsyndromeday.org/wdsd-conference

Watch it online – NY time – http://webtv.un.org/

1:30pm – 2:10pm           

Official Opening and Launch of World Down Syndrome Day “Health and Wellbeing – Access and Equality for All” Conference
With the adoption of United Nations General Assembly Resolution 66/149, the international community agreed to formally recognize World Down Syndrome Day every 21 March, to continue to raise public awareness of Down syndrome.  The resolution also calls upon the international community to continue to advocate for the rights of those with Down syndrome, including the right to healthcare, in accordance with Article 25 of the Convention on the Rights of Persons with Disabilities.  The speakers on this opening panel will touch on the multiple ways that United Nations Member States and agencies across the UN system are addressing this topic.
Vanessa dos Santos – President, Down Syndrome International – Welcome & Introductions
Daniela Bas – Director, Division for Social Policy and Development, UN Department of Economic and Social Affairs, “Message from the UN Secretary General”and High Level meeting outcome document
H.E. Mr. Antonio de Aguiar Patriota – Ambassador and Permanent Representative of Brazil to the UN
H.E. Mr. Ryszard Sarkowicz – Ambassador and Permanent Representative of Poland to the UN
H.E. Mr. Naoto Hisajima – Minister, Permanent Mission of Japan to the UN
Werner Obermeyer – Deputy to the Exec. Director, World Health Organization at UN Headquarters
2:20pm – 3:10pm           Keynote Address – Jaspreet Kaur Sekhon, Self Advocate
2:20pm – 3:10pm          
Moderator:      Vladimir Cuk – Acting Executive Director, International Disability Alliance
Panel:      Equal Access – Addressing healthcare without discrimination, bias, or misinformation at the macro & micro level
Persons with Down syndrome can face many barriers to appropriate healthcare ranging from open discrimination to more subtle practices, with practitioners in some cases not realizing that they are discriminating. This can lead to misdiagnosis and poor health outcomes. Panelists will share challenges seen on a macro, global level as well as specific examples at the country level and recommendations will be presented on how to address these issues.
Drew Boshell – Senior Director, Global Community Health Programs, Special Olympics, “Reducing Disparities In Global Health Access and Status for People with Intellectual/Developmental Disabilities”
Gopal Mitra – Program Specialist, Disability Section, UNICEF
Rosica Koleva – Program coordinator and inclusion advisor, Trisomija 21 – Skopje, Macedonia, “Equal Access to healthcare for people with Down syndrome: a timeline of medical concerns and an outline of good practices”
Sheila Heslam and Sara Pickard – Service Director and Self Advocate (respectively) and presenting together, Down’s Syndrome Association, United Kingdom, “Health and Well-being – We’re Taking Control”
3:10pm – 3:20pm           Break
3:20pm – 4:10pm          
Panel:      Equal Care – Common health concerns faced by persons with Down syndrome and medical best practices
This panel will share current best practices in different geographical areas and in countries at different developmental levels.  A common medical condition, heart defects, will be highlighted and there will be a discussion on how these defects can be potentially life threatening if they are not treated properly.  A self-advocate who works in a Down syndrome clinic will also share some personal experiences.
Dr. George Capone – Director, Down Syndrome Clinic, Kennedy Krieger, United States, “Health Care for All Persons with Down Syndrome”
Prof. S. Suresh – Managing Director, Mediscan Systems, India, “Equitable health care for children with Down syndrome – The Challenges”
Dr. John Mayer – Senior Associate in Cardiac Surgery, Boston Children’s Hospital, and Professor of Surgery, Harvard Medical School, United States, “Down Syndrome and Congenital Heart Disease”
Benjamin Majewski – Self Advocate – Self Advocate Resource Specialist, Massachusetts General Hospital, Down Syndrome Program, United States, “A Self-Advocate’s Perspective: Medical Issues Affecting People with Down syndrome”
4:10pm – 5:00pm          
Moderator:      Carolyn Cronin – Executive Director, Down Syndrome Research and Treatment Foundation
Panel:      Equal Research Emphasis – Areas of promise; Latest in Down syndrome research; Down syndrome and Alzheimer’s Disease
Although there is less funding for Down syndrome on a per capita basis than many other genetic conditions, the research world has made tremendous progress.  Relationships now exist between government agencies, NGOs and research scientists.  It is an exciting new world – research has shown there are clear links between Down syndrome and Alzheimer’s disease, there are clinical trials for treatments to improve cognition, and more.
Dr. Yvonne Maddox – Deputy Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health and Director, NIH Down Syndrome Consortium, United States, “Research and Advocacy: Improving the Lives of Those Living with Down Syndrome”
Dr. William Mobley – Distinguished Professor and Chair of the Department of Neurosciences at University of California San Diego (UCSD), Executive Director of UCSD’s Down Syndrome Center for Research and Treatment, and Florence Riford Chair of Alzheimer Disease, United States, “Enhancing cognition in people with Down Syndrome”
Prof. Tony Holland – University of Cambridge, Intellectual and Developmental Disabilities Research Group and Chair in Learning Disabilities, The Health Foundation, United Kingdom, “Understanding the link between Down syndrome and Alzheimer’s disease: developing preventative treatments”
Debora Seabra – Self Advocate – Brazil, “Healthcare must be inclusive – Article 25 of UN Convention on the Rights of Persons with Disabilities”
5:00pm – 5:50pm      
Moderator:      Jaroslaw Pieniak – Co-founder, Zespoldowna.info, Poland
Panel:      Equal Prospects – Importance of physical and mental healthcare for total wellbeing and living a full life
Article 25 of the Convention on the Rights of Persons with Disabilities provides that persons with disabilities, including Down syndrome, are entitled to health.  To close the World Down Syndrome Day Conference for 2014, this panel will highlight the importance of this basic human right, not just so a person can stay alive physically, but for him or her to live a meaningful and full life.
Dr. Karen Summar – Healthcare legislative assistant for U.S. Congresswomen Marsha Blackburn, former Joseph P. Kenney Foundation Public Policy Fellow; and former Director of several Down syndrome clinics, United States, “Mental wellness and illness in people with Down syndrome”
Dr. Balbir Singh – Trustee, Down Syndrome International and Founding Chairman, Down Syndrome Association, Singapore, “Better access for Healthcare for persons with Down syndrome – a Caregiver’s perspective”
Dr. Vera Mendes – General Coordinator of Health for People with Disabilities, Ministry of Health, Brazil, “Health guidelines for people with Down syndrome – working with civil society to improve equity and integration for health issues”
Thanjiwe Ndebele – Self Advocate – National Chairperson of the Self Advocacy Movement of South Africa, a programme of Down Syndrome South Africa, “Promoting healthy lifestyles through self advocacy”
5:45pm – 6pm             Conference Close
Closing Remarks:  Vanessa dos Santos – President, Down Syndrome International