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  • Formalising our Relationship with the World Health Organisation - Blog - Human Variome Project
    this will be the HVP Country Nodes and the International Confederation of Countries Advisory Council The Project has 22 formally constituted Country Nodes together with another six countries that are in the process of seeking membership These are found in all regions of the world The interest in HVP Country Nodes is growing fast as researchers clinicians and health bureaucrats increasingly realise the importance of national bodies to oversee the transparent and open sharing of variant data and information between countries The agreement sets out a number of specific areas for collaboration Creating a co ordinated international electronic forum to facilitate discussion and interaction between experts including health professionals researchers and academics on matters related to human genomics global health and service delivery and safety Organizing international meetings on matters related to human genomics and public health Providing technical and normative expertise on matters related to human genomics and public health Initially the issues to be focused on are likely to include The ethical and regulatory issues arising from international sharing of human genomic and genetic information The development of cost effective safe and quality health services in low middle income countries arising from the application of innovations in human genetics and genomics to these diseases The need to build capacity in low middle income countries to support the delivery of these innovative cost effective services The need to raise awareness in human genomics and genetics among public health officials particularly in Ministries of Health Should you wish to have any more information or to discuss becoming more involved in these activities please feel free to contact me via the comments below or by email This email address is being protected from spambots You need JavaScript enabled to view it Photo credit WHO Pierre Albouy Tagged in WHO Response to Principles of the translation of omi New global initiative launched to address genetic Comments Cristina Camprubí Friday 23 January 2015 Good morning for sure this is a great step for the HVP goal Although I m a new member of the HVP I know your efforts That s the reason why I joined to the project I m workind in the development of my start up that will offer to professionals and patients different services related to genetics and epigenetics One of them is to help Spanish professionals to manage the variants found in their patients promoting the importance and beneficts of sharing their data freely and openly I will put lots of effort to work in this field focussing them on the HVP Spanish Node step by step I will do my part to contribute to HVP Reply Cancel Timothy D Smith likes this comment Timothy D Smith Wednesday 28 January 2015 Great to hear Cristina Welcome to the Project And great to know that you ll help build the Spanish Node Feel free to get in touch with me if you need any support Reply Cancel Shan Zienolddiny Friday 23 January 2015 Good morning I am so pleased

    Original URL path: http://www.humanvariomeproject.org/blog/formalising-our-relationship-with-the-world-health-organisation.html (2016-02-10)
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  • The Czech Republic welcomed as HVP Country Node - Blog - Human Variome Project
    the process of establishing national genetic variation repositories and that have undertaken to share their data with the international community We are looking forward to working closely with our Czech colleagues Statement by the Scientific Director on the passin USA joins 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 to the Global Alliance for Genomics and Health Draft Constitution African genomics projects highlighted at major international scientific meeting A Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data South East Asian Node Launched in

    Original URL path: http://www.humanvariomeproject.org/blog/the-czech-republic-welcomed-as-hvp-country-node.html (2016-02-10)
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  • Egypt and Belgium Create HVP Country Nodes - Blog - Human Variome Project
    individual countries The Belgium Node will be created by the Belgian Society of Human Genetics and the Egyptian Node is being delivered by a consortium led out of Assiut University Hospital Human Variome Project on Target to Collect All Gen What is the Human Variome 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 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 to the Global Alliance for Genomics and Health Draft Constitution African genomics projects highlighted at major international scientific meeting A Global Alliance to Enable Responsible Sharing of Genomic and Clinical Data South East Asian Node Launched

    Original URL path: http://www.humanvariomeproject.org/blog/egypt-and-belgium-create-hvp-country-nodes.html (2016-02-10)
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  • New HVP Country Nodes - Blog - Human Variome Project
    are calling HVP Country Nodes secure repositories of all the genetic variants being discovered in the diagnostic laboratories of individual countries said Cotton HVP Country Nodes will not only be valuable sources of information to inform better diagnostic decisions and healthcare planning within the countries possessing nodes but will also share portions of their datasets with international gene and disease specific databases For more information see our page on Country Specific Nodes Speech by Professor Richard Cotton at a Function i Human Variome Project on Target to Collect All Gen 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

    Original URL path: http://www.humanvariomeproject.org/blog/new-hvp-country-nodes.html (2016-02-10)
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  • Vale, Richard Cotton - Blog - Human Variome Project
    kick start to suggested standards like this by offering the option to publish them in the journal Human Mutation When standards matured he dared to take the risk by demanding their use before accepting papers for publication in Human Mutation Dick Cotton was the man that inspired volunteers to become a curator for a gene variant database He motivated people to work on and publish standards for these databases on content data format data sharing etc He motivated Johan den Dunnen and his team in Leiden to develop software for web based database curation and to make this publicly available for free He motivated the establishment of the InSiGHT Database for Colon Cancer which is now the model for both the BRCA Challenge and the Global Globin 2020 initiative He made sure courses were started to educate people how to set up and curate a gene variant database and how to detect a gene mutation Dick also realised that to be successful in this endeavour we should involve the whole world He supported the attendance and active participation of scientists from developing countries in all these initiatives and promoted special sessions for platform presentations to present the successes achieved as well as the specific challenges faced by those working in the developing world He worked for and in the end achieved to get involvement of inter governmental organisation such as UNECSO and the World Health Organization which have become fundamental partners in the Human Variome Project s goals If it was not for Dick s leadership generosity of spirit his unrelenting good humour and persistent optimism in putting all these people efforts and achievements together we can only wonder where we would be in DNA based diagnostics and the delivery of genetic healthcare We thank him for his persistence and

    Original URL path: http://www.humanvariomeproject.org/blog/vale-richard-cotton.html (2016-02-10)
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  • Professor Sir John Burn to deliver the 2013 R Douglas Wright Lecture - Blog - Human Variome Project
    He led the study that demonstrated the use of aspirin in reducing the risk of colorectal and other cancers in persons with Lynch syndrome and leads an international consortium investigating chemoprevention in persons with hereditary non polyposis colon cancer He is currently exploring cell based vaccines for colorectal cancer and is involved in a startup company which aims to develop the use of nanowires nanotubes and nanoribbons in genotyping and gene sequencing The R Douglas Wright Lecture series is an annual lecture presented by the R Douglas Wright group of the University of Melbourne in memory of R Douglas Wright 1907 1990 Professor of Physiology and University Chancellor 1980 1989 Sir John s lecture The diagnosis treatment and prevention of genetic disease will examine how new technologies and an increasing understanding of the genetic determinants of both rare and common disease are starting to turn the noise of the approximately 3 million mostly irrelevant variants predicted to occur in each of us into a useful clinical signal These signals uncovered by cheap DNA testing performed in minutes can lead to better direct interventions and dramatic improvements in our health The R Douglas Wright Lecture Tuesday 3 September 2013 6 00pm 7 00pm The Auditorium Melbourne Brain Centre Ground Floor Kenneth Myer Building 30 Royal Parade corner Genetics Lane The University of Melbourne Admission is free Bookings are required Republic of Korea joins the Project Professor Sir John Burn to deliver the 2013 R Doug 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

    Original URL path: http://www.humanvariomeproject.org/blog/professor-sir-john-burn-to-deliver-the-2013-r-douglas-wright-lecture.html (2016-02-10)
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  • New global initiative launched to address genetic blood disorders - Blog - Human Variome Project
    and willingness to coordinate this major global initiative Mr Arnold stated The haemolytic anaemias collectively are cause for significant morbidity and mortality especially in parts of the world where health systems are often less well developed Children are often most severely affected Despite much being known for a long time about the genetics and biology of the haemolytic anaemias and this knowledge being used successfully in some countries to systematically reduce burden of disease low and middle income countries have remained practically untouched by this knowledge and innovations In launching the Challenge Professor bin Alwi said The Malaysian Node of Human Variome Project is honoured to be given the privilege to co chair this Global Globin Initiative Hemoglobinopathy in particular Thalassaemia is a common disease in Malaysia where about 5 of the population are carriers of the disease Helen Robinson a global health consultant from the Nossal Institute for Global Health at the University of Melbourne who worked on the development of the Project for the Human Variome Project said Commitment to systematic variant data collection is increasing but this is occurring mostly in high income countries where much of the diagnosis and testing takes place There is a risk that countries where the burden of these diseases is highest low and middle income countries are being left behind in a form of genomic divide The capacity to generate quality data on variants to store it so that it can be shared internationally needs to be built in these countries ENDS About the Human Variome Project The Human Variome Project is an international consortium of heath care professionals researchers and policy makers that are committed to the idea of free and open sharing of genomic variation information Our members come from over 80 countries and from every region of the

    Original URL path: http://www.humanvariomeproject.org/blog/new-global-initiative-launched-to-address-genetic-blood-disorders.html (2016-02-10)
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  • Australian Led Human Variome Project Launches South East Asian Node - Blog - Human Variome Project
    laboratories is critical to being able to find these changes and give better advice to patients and their families The Human Variome Project works with national health systems and national societies of health professionals to establish HVP Country Nodes information sharing hubs that connect all the laboratories in a country providing genetic testing services The launch of the Human Variome Project South East Asian Node was officiated by Tan Sri Muhyiddin Bin Yassin Deputy Prime Minister of Malaysia and Minister for Education and Professor Dato Dr Omar Osman Vice Chancellor of Universiti Sains Malaysia It was held during Hari UNESCO Malaysia 2013 the United Nations Educational Scientific and Cultural Organisation s annual celebration of Malaysia Day at Dataran Memorial Kemerdekaan Melaka on the 3rd of October 2013 In launching the Human Variome Project Malaysian Node Muhyiddin Bin Yassin noted that the Human Variome Project provides space for genetic diseases studied in various countries and also provides access to current reference source for doctors and researchers It is to help their daily clinical practice as well as help in the field of biomedical research The information obtained will be used for global importance 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 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 through 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

    Original URL path: http://www.humanvariomeproject.org/blog/australian-led-human-variome-project-launches-south-east-asian-node.html (2016-02-10)
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