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  • Major Grant Program Announced by Human Variome Project - Blog - Human Variome Project
    genetic disorders By focusing on projects involving partnerships of art least two countries we will increase opportunities for collaboration in the field of medical genetic and genomics In particular we want to build and strengthen existing collaborations between HVP Consortium members that have been operating for some time said Li ENDS About the Human Variome Project The Human Variome Project is an international consortium of scientists and health professionals working to improve global health through the free and open sharing of genetic variation information It was established in 2006 at a meeting in Melbourne Australia with the support of UNESCO and WHO The Human Variome Project acts as an umbrella organisation across multiple countries institutions and initiatives It works to encourage communication and collaboration around it central vision the improvement of global health trough the sharing of genomic knowledge The Human Variome Project has four roles to establish and maintain the standards systems and infrastructure necessary for the worldwide collection curation interpretation and sharing of information across the genome to advocate and promote ethical behaviour in the field of medical genetics and genomics to share knowledge about our genome and its function in determining health and to assist individuals and nations build their capacity to address genetics aspects of individual and global health The Human Variome Project is an offical NGO Partner of UNESCO with consultative status The International Coordinating Office is located in Melbourne Australia More information on the HVPCCDP and the Human Variome Project including high resolution photos and a transcript of Professor Xitao Li s speech can be found on the Human Variome Project website http www humnvariomeproject org or by contacting the International Coordinating Office via Timothy D Smith This email address is being protected from spambots You need JavaScript enabled to view it 61 419

    Original URL path: http://www.humanvariomeproject.org/blog/major-grant-program-announced-by-human-variome-project.html (2016-02-10)
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  • Questions about the 4th Human Variome Project Biennial Meeting - Blog - Human Variome Project
    will be released Q3 What is UNESCO s role during the meeting The Human Variome Project has worked closely with UNESCO since the Project was established in 2006 UNESCO provides valuable support to the Human Variome Project through its experience in creating partnerships capacity building and fostering cooperation between centres of excellence In 2011 UNESCO recognised the Project s close working relationship by recognising the Human Variome Project as an official partner Q4 What is genetic variation information Genetic variation information is information about the changes that occur in our DNA and what effect that has on our bodies Not all genetic variations are the same A change at one position in our genome may cause a particular disease like cystic fibrosis or maple syrup urine disease while a similar change at a different position may have no discernible effect whatsoever Q5 Why is sharing this information important Because the effect of each individual genetic variation on our bodies can differ widely we need to have accurate information on what these effects are in order to reliably diagnose patients with genetic diseases or who are at risk of developing a disease Unfortunately it is very difficult to predict the effect of a particular variation without evidence from previous cases Sharing information on genetic variations and their effect around the world will allow us to assemble a comprehensive body of knowledge about the human genome how it works and what happens when it changes This knowledge will allow us to more accurately diagnose more patients more quickly and may one day lead to better treatments and cures for the some 20 000 genetic diseases that affect people all around the world ENDS Media Contact Timothy D Smith This email address is being protected from spambots You need JavaScript enabled to view

    Original URL path: http://www.humanvariomeproject.org/blog/questions-about-the-4-th-human-variome-project-biennial-meeting.html (2016-02-10)
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  • Beijing Meeting Wraps Up - Blog - Human Variome Project
    their contribution to the world s population At the close of the meeting the Human Variome Project Consortium released a joint statement with the Human Variome Project Chinese Node reaffirming their commitment to the free and open sharing of genetic disease in a manner that protects the privacy and dignity of patients and their families The Human Variome Project next meets at UNESCO headquarters in Paris in June at their fourth biennial meeting ENDS About the Human Variome Project The Human Variome Project is an international consortium of clinicians scientists and pathologists who are committed to the free and open sharing of information on genetic variations and their effect The Human Variome Project acts as an umbrella organisation across multiple countries institutions and initiatives It works to encourage communication and collaboration around it central vision a reduction in the burden of genetic disease The Human Variome Project has three roles to establish and maintain the standards systems and infrastructure necessary for the worldwide collection curation and sharing of information across the genome to be a vehicle for collaboration on research and policy and to educate the field and the public about the prevalence and impact of genetic disease and the important role the sharing of information has in combating it Media Contact Timothy D Smith This email address is being protected from spambots You need JavaScript enabled to view it 61 0 419 357 589 http www humanvariomeproject org Beijing Meeting Wraps Up Rare Disease Day Comments No comments made yet Be the first to submit a comment Leave your comment Don t forget to log in If you re a member of the Human Variome Project Consortium you might want to log in before posting a comment Not a member Why not sign up Guest Wednesday 10 February 2016

    Original URL path: http://www.humanvariomeproject.org/blog/beijing-meeting-wraps-up-1.html (2016-02-10)
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  • Human Variome Project – Human Variome Project Chinese Node Joint Statement - Blog - Human Variome Project
    of that research We will work in partnership with the United Nations Educational Scientific and Cultural Organisation on education and capacity building in genetics and genomics and the health implications of genetic variations We will pursue joint projects with the World Health Organisation that improve public health programmes The Human Variome Project shall abide by the articles of the UNESCO Universal Declaration on the Human Genome and Human Rights and International Declaration on Human Genetic Data Members of the Human Variome Project shall work to ensure that all genetic data is collected and curated to the highest possible standard and shared freely and openly with the world No member of the Human Variome Project shall restrict access to information on the human genome and its variations through the application of patents or attempt to monopolise that information for commercial purposes Studies in genetic variation should have no borders and not discriminate against any individual or people regardless of nationality religion culture age or wealth Members of the Human Variome Project shall conduct themselves with the highest regard to professional ethics and ensure that the protection of patient privacy is paramount in all activities Members of the Human Variome Project shall respect every individual family culture tradition and value The Human Variome Project abhors the use of genetic information to adversely affect human health or to discriminate against an individual or population ENDS Media Contact Timothy D Smith This email address is being protected from spambots You need JavaScript enabled to view it This email address is being protected from spambots You need JavaScript enabled to view it 61 0 419 357 589 http www humanvariomeproject org Human Variome Project Human Variome Project Chin Beijing Meeting Wraps Up Comments No comments made yet Be the first to submit a comment Leave

    Original URL path: http://www.humanvariomeproject.org/blog/human-variome-project-human-variome-project-chinese-node-joint-statement-2.html (2016-02-10)
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  • Human Variome Project Beijing Meeting Opens in China - Blog - Human Variome Project
    are drawn from the most prominent and representative experts in each of the relevant disciplines worldwide The Human Variome Project Beijing Meeting aims to take the Project to the next level of international collaboration by specifically Cementing establishing collaborative relationships with relevant international bodies Introducing of the Chinese Node Roadmap Discussing the key issues involved in developing an HVP Country Node including Data models for country collection Software platforms Ethics Issues faced by low middle income countries Discussing key issues in establishment with the support of China of Gene Disease specific databases including Pathogenicity assignment Curation Facilitating the development of guidelines protocols and support to assist the establishment and maintenance of gene disease specific databases Developing a plan for the selection of genes and diseases for which databases are to be established and or assisted Establishing procedures for the alignment of existing national and gene disease specific databases Directly following the meeting there will be a one day inaugural meeting of the International Confederation of Countries Advisory Council this will be attended by the representatives of the HVP Country Nodes ENDS About the Human Variome Project The Human Variome Project is an international consortium of clinicians scientists and pathologists who are committed to the free and open sharing of information on genetic variations and their effect The Human Variome Project acts as an umbrella organisation across multiple countries institutions and initiatives It works to encourage communication and collaboration around it central vision a reduction in the burden of genetic disease The Human Variome Project has three roles to establish and maintain the standards systems and infrastructure necessary for the worldwide collection curation and sharing of information across the genome to be a vehicle for collaboration on research and policy and to educate the field and the public about the prevalence

    Original URL path: http://www.humanvariomeproject.org/blog/human-variome-project-beijing-meeting-opens-in-china-1.html (2016-02-10)
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  • Ensuring the Free and Open Sharing of Clinically Relevant Genome Variants - A Statement by the Human Variome Project Consortium - Blog - Human Variome Project
    variation and its impact on health and disease Open data sharing of patient genotypes and phenotypes is necessary to achieve these advances The Human Variome Project believes that all laboratories that undertake genetic testing for diagnostic prognostic or screening purposes must share the molecular and phenotypic data generated or collected in the course of testing in an appropriate public database Not sharing this data prevents comparative assessments of variant interpretations reduces consensus building decreases the quality of test interpretations and allows for potential harm to patients To this end the Human Variome Project fully supports the recent American College of Medical Genetics and Genomics Position Statement on Public Disclosure of Clinically Relevant Genome Variants http short variome org acmg crgv statement Further the Human Variome Project calls on national governments regulatory bodies and professional societies to facilitate the free and open sharing of this information by reducing legislative and procedural barriers While the Human Variome Project recognises the sensitive nature of genetic information and accompanying clinical data and is aware of the ethical legal and social issues inherent in its collection storage and use the Project also recognises that this same information is fundamental to the practice of genetic and genomic medicine A balance must be struck between protecting individual privacy and establishing a body of evidence capable of providing life saving medical intervention to the population at large The Human Variome Project and UNESCO celebrate 60 Republic of Korea joins the Project Comments No comments made yet Be the first to submit a comment Leave your comment Don t forget to log in If you re a member of the Human Variome Project Consortium you might want to log in before posting a comment Not a member Why not sign up Guest Wednesday 10 February 2016 Captcha Image I

    Original URL path: http://www.humanvariomeproject.org/blog/ensuring-the-free-and-open-sharing-of-clinically-relevant-genome-variants-a-statement-by-the-human-variome-project-consortium-2.html (2016-02-10)
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  • Statement by the Scientific Director on the passing of David Rimoin - Blog - Human Variome Project
    the University of California Los Angeles David s support and work for the Human Variome Project was tireless David s tenure as the first Chair of the Project s International Scientific Advisory Committee was incredibly productive In this role he oversaw the establishment and growth of the Human Variome Project Consortium to include over 700 individual members twelve HVP Country Nodes and 33 gene disease specific databases David was also particularly instrumental in starting discussions around establishing an HVP Country Node in the United States David will be sorely missed by every member of the Human Variome Project Consortium His energy and enthusiasm for the Project and for the field of medical genetics was evident to all who were lucky enough to meet him At our meetings he was always a leading voice in every discussion He will be missed and our upcoming 4th biennial meeting in Paris in just a few short weeks will not be the same without him Our thoughts are with David s family at this time Rare Disease Day The Czech Republic welcomed as HVP Country Node Comments No comments made yet Be the first to submit a comment Leave your comment Don t forget to log in If you re a member of the Human Variome Project Consortium you might want to log in before posting a comment Not a member Why not sign up Guest Wednesday 10 February 2016 Captcha Image I have read and agree to the Terms Conditions Categories News Press Releases Statements Speeches Capacity Building Collaborating Projects HVP Country Nodes China Czech Republic Republic of Korea South East Asia Regional USA United Kingdom Venezuela Ethical Legal Social Issues Microattribution Subscribe by Email Get fresh blog posts delivered straight to your inbox Subscribe Popular Posts Human Variome Project International Limited Response

    Original URL path: http://www.humanvariomeproject.org/blog/statement-by-the-scientific-director-on-the-passing-of-david-rimoin.html (2016-02-10)
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  • Human Variome Project – Human Variome Project Chinese Node Joint Statement - Blog - Human Variome Project
    together to promote genetic research that improves human health and enable the free and open sharing of the results of that research We will work in partnership with the United Nations Educational Scientific and Cultural Organisation on education and capacity building in genetics and genomics and the health implications of genetic variations We will pursue joint projects with the World Health Organisation that improve public health programmes The Human Variome Project shall abide by the articles of the UNESCO Universal Declaration on the Human Genome and Human Rights and International Declaration on Human Genetic Data Members of the Human Variome Project shall work to ensure that all genetic data is collected and curated to the highest possible standard and shared freely and openly with the world No member of the Human Variome Project shall restrict access to information on the human genome and its variations through the application of patents or attempt to monopolise that information for commercial purposes Studies in genetic variation should have no borders and not discriminate against any individual or people regardless of nationality religion culture age or wealth Members of the Human Variome Project shall conduct themselves with the highest regard to professional ethics and ensure that the protection of patient privacy is paramount in all activities Members of the Human Variome Project shall respect every individual family culture tradition and value The Human Variome Project abhors the use of genetic information to adversely affect human health or to discriminate against an individual or population ENDS Human Variome Project Beijing Meeting Opens in Chi Human Variome Project Human Variome Project Chin Comments No comments made yet Be the first to submit a comment Leave your comment Don t forget to log in If you re a member of the Human Variome Project Consortium you might

    Original URL path: http://www.humanvariomeproject.org/blog/human-variome-project-human-variome-project-chinese-node-joint-statement.html (2016-02-10)
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