{"id":26214,"date":"2014-03-17T18:10:59","date_gmt":"2014-03-17T21:10:59","guid":{"rendered":"http:\/\/www.inclusive.org.br\/?p=26214"},"modified":"2014-03-17T18:10:59","modified_gmt":"2014-03-17T21:10:59","slug":"world-down-syndrome-day-conference-2014-at-the-un-ny-access-to-health","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=26214","title":{"rendered":"World Down Syndrome Day Conference 2014 at the UN, NY &#8211; Access to Health"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-21922\" alt=\"Logotipo do dia internacional da sindrome de Down - World Down Syndrome Day, em vermelho e azul\" src=\"http:\/\/inclusivenews.com.br\/wp-content\/uploads\/wdsd_logo_2012.jpg\" width=\"320\" height=\"149\" \/><\/p>\n<p>2014 WDSD \u201cHEALTH AND WELLBEING \u2013 ACCESS AND EQUALITY FOR ALL\u201d CONFERENCE PROGRAM<\/p>\n<p>United Nations Headquarters<\/p>\n<p>21 March 2014, Friday<\/p>\n<p>Registration Open &#8211; FREE OF CHARGE &#8211;\u00a0<a href=\"http:\/\/www.worlddownsyndromeday.org\/wdsd-conference\">http:\/\/www.worlddownsyndromeday.org\/wdsd-conference<\/a><\/p>\n<p>Watch it online &#8211; NY time &#8211;\u00a0<a href=\"http:\/\/webtv.un.org\/\">http:\/\/webtv.un.org\/<\/a><\/p>\n<p><b>1:30pm &#8211; 2:10pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/b><\/p>\n<div><b>Official Opening and Launch of World Down Syndrome Day \u201cHealth and Wellbeing \u2013 Access and Equality for All\u201d Conference<\/b><\/div>\n<div>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.\u00a0\u00a0The 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.\u00a0\u00a0The 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.<\/div>\n<div><b>Vanessa dos Santos<\/b>\u00a0\u2013 President, Down Syndrome International \u2013\u00a0<i>Welcome &amp; Introductions<\/i><\/div>\n<div><b>Daniela Bas<\/b>\u00a0\u2013\u00a0Director, Division for Social Policy and Development, UN Department of Economic and Social Affairs, \u201c<i>Message from the UN Secretary General\u201dand High Level meeting outcome document<\/i><\/div>\n<div><b>H.<\/b><b>E. Mr. Antonio de Aguiar Patriota<\/b>\u00a0\u2013\u00a0Ambassador and Permanent Representative of Brazil to the UN<\/div>\n<div><b>H.<\/b><b>E. Mr. Ryszard Sarkowicz<\/b>\u00a0\u2013\u00a0Ambassador and Permanent Representative of Poland to the UN<\/div>\n<div><b>H.<\/b><b>E. Mr. Naoto Hisajima<\/b>\u00a0\u2013\u00a0Minister, Permanent Mission of Japan to the UN<\/div>\n<div><b>Werner Obermeyer\u00a0<\/b>\u2013 Deputy to the Exec. Director, World Health Organization at UN Headquarters<\/div>\n<div><\/div>\n<div><b>2:20pm \u2013 3:10pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0Keynote Address \u2013 Jaspreet Kaur Sekhon, Self Advocate<\/b><\/div>\n<div><b>\u00a0<\/b><\/div>\n<div><b>2:20pm \u2013 3:10pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/b><\/div>\n<div><b>Moderator:<\/b>\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<b>Vladimir Cuk<\/b>\u00a0\u2013 Acting Executive Director, International Disability Alliance<\/div>\n<div><b>Panel:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0Equal Access \u2013 Addressing healthcare without discrimination, bias, or misinformation at the macro &amp; micro level<\/b><\/div>\n<div>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.<\/div>\n<div><b>Drew Boshell\u00a0<\/b>\u2013 Senior Director, Global Community Health Programs, Special Olympics<i>, \u201cReducing Disparities In Global Health Access and Status for People with Intellectual\/Developmental Disabilities\u201d<\/i><\/div>\n<div><b>Gopal Mitra \u2013\u00a0<\/b>Program Specialist, Disability Section, UNICEF<\/div>\n<div><b>Rosica Koleva<\/b>\u00a0\u2013\u00a0Program coordinator and inclusion advisor,\u00a0Trisomija 21 \u2013 Skopje, Macedonia,\u00a0<i>&#8220;Equal Access to healthcare for people with Down syndrome: a timeline of medical concerns and an outline of good practices&#8221;<\/i><\/div>\n<div><b>Sheila Heslam and Sara Pickard<\/b>\u00a0\u2013 Service Director and\u00a0<i>Self Advocate<\/i>\u00a0(respectively) and presenting together, Down\u2019s Syndrome Association, United Kingdom,\u00a0<i>\u201cHealth and Well-being \u2013 We\u2019re Taking Control\u201d<\/i><\/div>\n<div><\/div>\n<div><b>3:10pm \u2013 3:20pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0Break<\/b><\/div>\n<div><b>\u00a0<\/b><\/div>\n<div><b>3:20pm \u2013 4:10pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/b><\/div>\n<div><b>Moderator:<\/b><\/div>\n<div><b>Panel:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0Equal Care \u2013 Common health concerns faced by persons with Down syndrome and medical best practices<\/b><\/div>\n<div>This panel will share current best practices in different geographical areas and in countries at different developmental levels.\u00a0\u00a0A 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.\u00a0\u00a0A self-advocate who works in a Down syndrome clinic will also share some personal experiences.<\/div>\n<div><b>Dr. George Capone<\/b>\u00a0\u2013 Director, Down Syndrome Clinic, Kennedy Krieger, United States,<i>\u00a0\u201cHealth Care for All Persons with Down Syndrome\u201d<\/i><\/div>\n<div><b>Prof. S. Suresh<\/b>\u00a0\u2013 Managing Director, Mediscan Systems, India<i>, \u201c<\/i><i>Equitable health care for children with Down syndrome &#8211; The Challenges&#8221;<\/i><\/div>\n<div><b>Dr. John Mayer<\/b>\u00a0\u2013 Senior Associate in Cardiac Surgery, Boston Children\u2019s Hospital, and Professor of Surgery, Harvard Medical School, United States,\u00a0<i>\u201cDown Syndrome and Congenital Heart Disease\u201d<\/i><\/div>\n<div><b>Benjamin Majewski<\/b>\u00a0\u2013\u00a0<i>Self Advocate<\/i>\u00a0\u2013 Self Advocate Resource Specialist, Massachusetts General Hospital, Down Syndrome Program, United States,<i>\u00a0\u201c<\/i><i>A Self-Advocate&#8217;s Perspective: Medical Issues Affecting People with Down syndrome\u201d<\/i><\/div>\n<div><\/div>\n<div><strong>4:10pm \u2013 5:00pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/strong><\/div>\n<div><b>Moderator:<\/b>\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<b>Carolyn Cronin<\/b>\u00a0\u2013 Executive Director, Down Syndrome Research and Treatment Foundation<\/div>\n<div><b>Panel:<\/b>\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<strong>Equal Research Emphasis \u2013 Areas of promise; Latest in Down syndrome research; Down syndrome and Alzheimer\u2019s Disease<\/strong><\/div>\n<div>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.\u00a0\u00a0Relationships now exist between government agencies, NGOs and research scientists.\u00a0\u00a0It is an exciting new world &#8211; research has shown there are clear links between Down syndrome and Alzheimer\u2019s disease, there are clinical trials for treatments to improve cognition, and more.<\/div>\n<div><b>Dr. Yvonne Maddox\u00a0<\/b>\u2013 Deputy Director,\u00a0<i>Eunice Kennedy Shriver<\/i>\u00a0National Institute of Child Health and Human Development (NICHD), National Institutes of Health and Director, NIH Down Syndrome Consortium, United States,\u00a0<i>\u201cResearch and Advocacy: Improving the Lives of Those Living with Down Syndrome\u201d<\/i><\/div>\n<div><b>Dr. William Mobley<\/b>\u00a0\u2013\u00a0Distinguished Professor and Chair of the Department of Neurosciences at University of California San Diego (UCSD), Executive Director of UCSD&#8217;s Down Syndrome Center for Research and Treatment, and Florence Riford Chair of Alzheimer Disease, United States<i>, \u201c<\/i><i>Enhancing cognition in people with Down Syndrome\u201d<\/i><\/div>\n<div><b>Prof. Tony Holland\u00a0<\/b>\u2013 University of Cambridge, Intellectual and Developmental Disabilities Research Group and Chair in Learning Disabilities, The Health Foundation, United Kingdom,\u00a0<i>\u201cUnderstanding the link between Down syndrome and Alzheimer\u2019s disease: developing preventative treatments\u201d<\/i><\/div>\n<div><b>Debora Seabra<\/b><b>\u00a0<\/b>\u2013\u00a0<i>Self Advocate<\/i>\u00a0\u2013\u00a0Brazil,\u00a0<i>\u201cHealthcare must be inclusive \u2013 Article 25 of UN Convention on the Rights of Persons with Disabilities\u201d<\/i><\/div>\n<div><\/div>\n<div><b>\u00a0<\/b><\/div>\n<div><b>5:00pm \u2013 5:50pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/b><\/div>\n<div><b>Moderator:<\/b>\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<b>Jaroslaw Pieniak<\/b>\u00a0\u2013 Co-founder, Zespoldowna.info, Poland<\/div>\n<div><b>Panel:\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/b><b>Equal Prospects \u2013 Importance of physical and mental healthcare for total wellbeing and living a full life<\/b><\/div>\n<div>Article 25 of the Convention on the Rights of Persons with Disabilities provides that persons with disabilities, including Down syndrome, are entitled to health.\u00a0\u00a0To 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.<\/div>\n<div><b>Dr. Karen Summar<\/b>\u00a0\u2013\u00a0Healthcare 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,\u00a0<i>\u201cMental wellness and illness in people with Down syndrome\u201d<\/i><\/div>\n<div><b>Dr. Balbir Singh<\/b>\u00a0\u2013 Trustee, Down Syndrome International and Founding Chairman, Down Syndrome Association, Singapore,\u00a0<i>\u201cBetter access for Healthcare for persons with Down syndrome \u2013 a Caregiver\u2019s perspective\u201d<\/i><\/div>\n<div><b>Dr. Vera Mendes\u00a0<\/b>\u2013 General Coordinator of Health for People with Disabilities, Ministry of Health, Brazil,\u00a0<i>&#8220;Health guidelines for people with Down syndrome \u2013 working with civil society to improve equity and integration for health issues\u201d<\/i><\/div>\n<div><b>Thanjiwe Ndebele<\/b>\u00a0\u2013\u00a0<i>Self Advocate<\/i>\u00a0\u2013\u00a0National Chairperson of the Self Advocacy Movement of South Africa, a programme of Down Syndrome South Africa, \u201c<i>Promoting healthy lifestyles through self advocacy\u201d<\/i><\/div>\n<div><\/div>\n<div><b>5:45pm \u2013 6pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0Conference Close<\/b><\/div>\n<div><b>Closing Remarks:\u00a0\u00a0Vanessa dos Santos<\/b>\u00a0\u2013 President, Down Syndrome International<\/div>\n","protected":false},"excerpt":{"rendered":"<p>2014 WDSD \u201cHEALTH AND WELLBEING \u2013 ACCESS AND EQUALITY FOR ALL\u201d CONFERENCE PROGRAM United Nations Headquarters 21 March 2014, Friday Registration Open &#8211; FREE OF CHARGE &#8211;\u00a0http:\/\/www.worlddownsyndromeday.org\/wdsd-conference Watch it online &#8211; NY time &#8211;\u00a0http:\/\/webtv.un.org\/ 1:30pm &#8211; 2:10pm\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Official Opening and Launch of World Down Syndrome Day \u201cHealth and Wellbeing \u2013 Access and Equality for All\u201d [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-container-style":"default","site-container-layout":"default","site-sidebar-layout":"default","disable-article-header":"default","disable-site-header":"default","disable-site-footer":"default","disable-content-area-spacing":"default","footnotes":""},"categories":[3,5,12,38,48,37,239],"tags":[],"class_list":["post-26214","post","type-post","status-publish","format-standard","hentry","category-campanhas","category-convencao","category-cursos-e-eventos","category-deficiencia","category-inclusao","category-saude","category-wdsd-2014"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>World Down Syndrome Day Conference 2014 at the UN, NY - Access to Health -<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/inclusivenews.com.br\/?p=26214\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"World Down Syndrome Day Conference 2014 at the UN, NY - Access to Health -\" \/>\n<meta property=\"og:description\" content=\"2014 WDSD \u201cHEALTH AND WELLBEING \u2013 ACCESS AND EQUALITY FOR ALL\u201d CONFERENCE PROGRAM United Nations Headquarters 21 March 2014, Friday Registration Open &#8211; 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