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  • GG2020 Satellite - HVP6 | Global Globin 2020 Challenge | Project-wide Initiatives | HVP Meetings & Events | meetings - Human Variome Project
    GG2020 Satellite HVP6 Global Globin 2020 Challenge Monday May 30 2016 7 00 Tuesday May 31 2016 15 30 A satellite meeting of the 6th Biennial Meeting of the Human Variome Project Consortium Navigate Home About Activities Solutions Resources Meetings Blog Donate Members Login More Sitemap Privacy Policy Search Login Contact Us Contact the International Coordinating Office Human Variome Project International Ltd Level 1 200 Berkeley Street University of Melbourne

    Original URL path: http://www.humanvariomeproject.org/meetings/global-globin-2020-challenge/gg202-satellite-hvp6.html (2016-02-10)
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  • Global Globin 2020 Challenge | Project-wide Initiatives | HVP Meetings & Events | meetings - Human Variome Project
    Haemoglobinopathies to Advance Genomic Medicine the Human Variome Project s Global Globin Initiative 17 Sep 2015 GG2020 Symposium at APCHG2015 4 Nov 2015 Applying new human genomics techniques and middle income countries Global Globin 2020 Challenge 30 May 2016 GG2020 Satellite HVP6 Navigate Home About Activities Solutions Resources Meetings Blog Donate Members Login More Sitemap Privacy Policy Search Login Contact Us Contact the International Coordinating Office Human Variome Project International

    Original URL path: http://www.humanvariomeproject.org/meetings/global-globin-2020-challenge/project-wide-initiatives/ (2016-02-10)
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  • Sitemap - Human Variome Project
    Country Node Resources HVP Country Node Awards 2016 Gene Disease Specific Databases BRCA Challenge Global Globin 2020 Challenge Members resources Countries Involved Background Information Sequence Variant Description Committee UNESCO Ethics Standards Project Collaborations Work Products Draft Standards Guidelines Policy Documents ISAC Documents ICCAC Documents G DSDBAC Documents Position Papers Interest Groups Publications Solutions Standards Development Process Standards and Guidelines under Development WG02 Assigning Pathogenicity to a Genetic Variant WG03 Minimal content for gene variant databases LSDBs WG04 Sequence Variant Description Committee WG06 Disease Phenotype Descriptions in Gene Disease Specific Databases WG07 Minimum Content of a Country Specific Database WG08 Ethics Checklist for Gene Disease Specific Database Curators and Submitters Recommended Systems Resources Ethical Legal and Social Issues Resources Genetics and Genomics Journals Meetings HVP Biennial Meetings Special HVP Meetings HVP Scientific Meetings HVP Fora Project wide Initiatives BRCA Challenge Global Globin 2020 Challenge Blog Categories Capacity Building The Human Variome Project Global Coordination in Data Sharing China 欢迎你 中国 Collaborating Projects Formalising our Relationship with the World Health Organisation Czech Republic The Czech Republic welcomed as HVP Country Node Ethical Legal Social Issues Grey genomics w VCGS Senior Scientist Belinda Chong Points to Consider Ethical Legal and Psychosocial Implications of Genetic Testing in Children and Adolescents HVP Country Nodes Egypt and Belgium Create HVP Country Nodes New HVP Country Nodes Microattribution Birds buckets beaches An analogy about genomics News New International Scientific Advisory Committee Appointments New Board Appointments Vale Richard Cotton Professor Sir John Burn to deliver the 2013 R Douglas Wright Lecture A Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data Press Releases New global initiative launched to address genetic blood disorders African genomics projects highlighted at major international scientific meeting Australian Led Human Variome Project Launches South East Asian Node Professor Sir John Burn to

    Original URL path: http://www.humanvariomeproject.org/sitemap.html (2016-02-10)
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  • Privacy Policy - Human Variome Project
    your inquiry registration or application Our website Human Variome Project International Ltd maintains the Human Variome Project website http www humanvariomeproject org The information that we collect about you via this website is stored on servers located in the United States and managed according to this policy Website analytics and cookies We use a range of tools provided by third parties for example Google to collect or view website traffic information These providers have their own privacy policies Our website uses cookies as almost all websites do to help provide you with the best experience we can Cookies are small text files that are placed on your computer or mobile phone when you browse websites Our cookies help us Make our website work as you d expect Save you having to login every time you visit the site Improve the speed security of the site Allow you to share pages with social networks like Facebook Personalise our site to you to help you get what you need faster Continuously improve our website for you Make our services more efficient We do not use cookies to Collect any personally identifiable information without your express permission Collect any sensitive information Pass data to advertising networks Pass personally identifiable data to third parties Pay sales commissions The information collected by cookies may include the IP address of the device you are using and information about sites that IP address has come from the pages accessed on our site and the next site visited If the settings on your software that you are using to view this website your browser are adjusted to accept cookies we take this and your continued use of our website to mean that you are fine with this Should you wish to remove or not use cookies from our site you can however doing so will likely mean that our site will not work as you would expect Social Networking Services We use social networking services such as Twitter Facebook and YouTube to communicate with the public about the Human Variome Project When you communicate with us using these services we may collect your personal information but we only use it to help us to communicate with you and the public The social networking service will also handle your personal information for its own purposes These sites have their own privacy policies Email lists We collect your email and if you provide it other contact details when you subscribe to our email lists We only use this information for the purpose of sending you regular updates on the activities of the Human Variome Project and to administer the lists Disclosure We very rarely disclose personal information When we do we do so very carefully Membership Lists Membership lists are only made available to other members of the Human Variome Project Consortium You can control how much of the personal information that we have collected about you appears on these lists through the privacy settings available when editing your user

    Original URL path: http://www.humanvariomeproject.org/privacy.html (2016-02-10)
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  • Search - Human Variome Project - Human Variome Project
    that Entering this not that into the search form will return results containing this and not that Entering this or that into the search form will return results containing either this or that Entering this and that with quotes into the search form will return results containing the exact phrase this and that Search results can also be filtered using a variety of criteria Select one or more filters below to get started Search by Author Search All Casimiro Vizzini Catherine Carnovale Chris Arnold Fan Li Helen Merrideth Robinson Peter Collins Timothy D Smith Search by Category Search All About Activities Board Brief Updates Capacity Building China Collaborating Projects Czech Republic Donations Ethical Legal Social Issues Former Board Members Former ISAC Members Global Globin 2020 Challenge HVP Country Nodes ICO ISAC Members Membership Microattribution News Past Consultations Press Releases Republic of Korea Resources RSS SDP sh404SEF custom content Solutions South East Asia Regional Speeches Statements Uncategorised United Kingdom USA Venezuela Search by Language Search All en GB Search by Type Search All Articles Categories EasyBlog Entries Navigate Home About Activities Solutions Resources Meetings Blog Donate Members Login More Sitemap Privacy Policy Search Login Contact Us Contact the International Coordinating Office

    Original URL path: http://www.humanvariomeproject.org/search.html (2016-02-10)
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  • Vision - Human Variome Project
    families would benefit from the faster diagnosis and the more accurate prognosis of their disease and the better treatments this information can be used to create That envisioned future is not today but by working together towards this Vision it can become a reality much sooner than we think Mission It is the mission of the Human Variome Project Consortium to establish and maintain the standards systems and infrastructure for the responsible collection and free and open sharing of information on all genomic variations Our Core Values Our Core Values guide and direct our actions and behaviours and are embedded in our systems and processes the way we make decisions and the way we deal with each other the wider human genetics and genomics community and the patients and their families that we all work to serve Collaboration We recognise that success will come by acting together with the widest possible stakeholder group We will work hard to understand respect and take account of the differing needs of each Celebration We give credit and acknowledge all contributions made celebrate key milestones including all diseases that are diagnosed treated and prevented as a result of the sharing of data Respect We work hard to understand and respect the varying needs of all stakeholders We will have the utmost respect for the privacy and confidentiality of patient information and will be serious about relevant ethical legal political and social issues Inclusion We include all countries all peoples and all disciplines without discrimination Service We exist to serve each other the Consortium as a whole its members the community and in particular to serve those now and in the future with a disease that can be more easily diagnosed treated and prevented as a result of the sharing of genomic knowledge Professionalism We

    Original URL path: http://www.humanvariomeproject.org/about/vision.html (2016-02-10)
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  • Strategy - Human Variome Project
    and related services or counselling patients and their families The issues are complex multi faceted and fluid changing as the field grows Being an international organization the Human Variome Project encompasses the full range of diversity in relation to cultural gender ethnicity disability and religious differences This diversity of views and perspectives enriches the debate of issues and can assist in finding better solutions and outcomes in a global world Specific legal and policy issues related to intellectual property regulation access to services and information consumer and human rights will arise and need to be addressed in a manner that is proactive and open There is a need to share good practices and experiences and to promote transparency both with the Human Variome Project s network and beyond Sharing Knowledge Sharing knowledge is a key priority for the Human Variome Project The Human Variome Project is committed to the free and open exchange of knowledge that is relevant to the practice of genetic and genomic medicine within the boundaries of an appropriate ethical framework Sharing knowledge amongst members of the Consortium and beyond is critical to the ongoing success of the Human Variome Project Knowledge can be thought of as comprising three separate categories Technical knowledge This relates to the specific molecular and clinical data that describe genetic variants and their consequences for patients is shared via the Project s Global Collection Architecture and how this can be efficiently and effectively shared across boundaries Collaborative Expertise how technical and other information and knowledge can be shared across the variety of roles and disciplines and stakeholders in a collaborative manner for example how developments in research get translated readily into healthcare delivery how patients needs influence the resources agenda or how cost effective approaches developed in low income settings can influence practices in high income settings Advocacy the sharing of knowledge to advance the field of genomics and genetic medicine to those who can influence the growth of the field Techniques and best practice for the collection curation interpretation and sharing of genetic variation data must be shared in a variety of ways The Human Variome Project Solution Blueprint will describe the standards and guidelines developed by the Consortium But the Project must go further than this and continually seek to improve the learning and training opportunities for Consortium members through knowledge exchange ventures professional development and training courses Beyond the Consortium the Human Variome Project has a role to play in providing public education initiatives that increase knowledge about the molecular basis of disease and why the availability of data will provide opportunities for research and treatment and how the public and policy makers can assist the Project by making their information available for use and inclusion in Human Variome Project data repositories Building Capacity To develop a more strategic approach to education and training in response to global pressures and expanding need for skills and knowledge in the next 5 to 10 years Lack of specialized staff is one

    Original URL path: http://www.humanvariomeproject.org/about/strategy.html (2016-02-10)
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  • Legal Structure - Human Variome Project
    the now HVP project Chris has always held a portfolio of non executive directorships including in the not for profit sector and has made significant contributions in the area of leadership through board membership of Leadership Victoria and Philanthropy Australia Current directorships include Chairman of Telediagnostics Pty Ltd member of BioGrid Australia Ltd and Skin Cancer Foundation Inc boards and principal of Hodgson Associates Chris joined the inaugural board of HVPI Ltd in 2010 supporting David Abraham and Dick Cotton in the establishment of sound governance practices for the project growing the HVP family and gaining NGO status with UNESCO As Chairman of the recently expanded HVPI Ltd board Chris is looking forward to taking a active role in the Board s support for the project internationally and within the genomics hub in Melbourne Zilfalil bin Alwi Director Zilfalil bin Alwi started his medical career as a medical officer in 1991 after completing his Bachelor of Medicine and Bachelor of Surgery MBBS degree at University of Dacca Bangladesh He obtained a Masters degree MSc in Medical Genetics from University of Glasgow United Kingdom and continued his studies at University of Aston United Kingdom where he was awarded Doctor of Philosophy PhD in Pharmacogenetics His research interest includes genetics of childhood Spinal Muscular Atrophy SMN genes NAIP gene population genomics genetic diversity of the Malay race and genome wide studies on diseases common to the local population He has published more than 80 publications in international and local journals and presented more than 100 papers at local and international conferences He is a member of the Pan Asia SNP research consortium which studies the genomic profile of the Asian population He is also the head of the Malaysian Node of the Human Variome Project founding President of the Malaysian Society of Human Genetics and the Deputy President of the Genetics Society of Malaysia PGM James Angus Director James Angus graduated in Science from the University of Sydney in 1970 and completed his PhD there in 1974 An NHMRC CJ Martin Fellowship enabled him to work with eminent pharmacologist and later Nobel Laureate Sir James Black from 1977 to 1978 at University College London and at the Wellcome Research Laboratories He returned to Australia working at the Baker Institute as NHMRC Senior Principal Research Fellow in the field of cardiovascular pharmacology and was appointed to a Personal Chair in Pharmacology at Monash University in 1992 In 1993 James Angus joined the University of Melbourne as Chair of Pharmacology and Head of the Department of Pharmacology In 1999 2001 he was a Member of the University Council and in 2000 2001 President of the University s Academic Board He was Pro Vice Chancellor from 1999 2001 and was appointed Deputy Dean of the Faculty of Medicine Dentistry and Health Sciences in 2002 and Dean of the Faculty in 2003 James Angus has been a recipient of many distinguished awards the Gottschalk Medal of the Australian Academy of Science 1984 Australia s Centenary Medal

    Original URL path: http://www.humanvariomeproject.org/about/legal-structure.html (2016-02-10)
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