From: Sharon Terry Sent: Friday, April 19, 2013 9:05 AM Subject: Register now: Registries for All - new webinar series Email not displaying correctly? View it in your browser.<https://urldefense.proofpoint.com/v1/url?u=http://us5.campaign-archive2.com/?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3Db3b61521ad%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=245a3c3f39d7233ea94c92dbf5497a6a350d2c444145b7d07faf3f65b5eacea6> [http://gallery.mailchimp.com/a9e55c5fcbe8bce63e2c83eb9/images/image_13661357904241366135792.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3Dc649dacbec%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=5dad61ca8c67d624bb19046293a054ee4cfde5bd82ac08e454dcf6a715c8dfb2> Registries for All (Reg4ALL)<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3Dc6611e6fe7%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=8f3547966c855ecba338bc21f5b100780aa6d5e5fdccbc1fa98b7a82da6c4b42> is an innovative new registry platform that aims to accelerate research and improve health for all. Reg4ALL users begin by answering simple and engaging questions about their health, and then set specific privacy settings that reflect exactly how confortable they are with sharing that information. Two exciting features make Reg4ALL unique. First, users can share as much or as little as they want with as many or as few people and institutions as they want – better still, their sharing preferences can be changed as frequently and quickly as their health or feelings about privacy change. Second, Reg4ALL users can set preferences that allow researchers or disease advocacy organizations to reach out to them with news about clinical trials or new programs. With this distinctive feature, Reg4ALL allows users a new type of control over their health data and future, provides researchers with an easier, faster system to recruit for medical research, and gives advocacy organizations more tools to grow and thrive. Find out how Reg4ALL works – and how to make it work for you! The webinars will occur every other week from early May to early August, and will take place at 12pm EST. All webinars are free of charge and are archived for later viewing. In general, the webinars will last one hour, including ample time for questions. What is Reg4ALL? | 5/1/2013 The basics: How to make an account, control sharing settings, interact with researchers. What is a registry? What is a biobank? | 5/16/2013 Nuts and bolts on registries and biobanks. What are they good for? Reg4ALL and Disease Advocacy Organizations | 5/29/2013 Learn how advocacy organizations can create and manage their own registries. More Reg4ALL for Disease Advocacy Organizations | 6/13/2013 A detailed explanation of how to create and manage your own registry system using Reg4ALL. Reg4ALL and Researchers | 6/26/2013 Researchers are invited to join us to find out how Reg4ALL, and its powerful search engine RecruitSource, provides an easier, faster way to recruit patients to clinical trials. Reg4ALL and Individuals | 7/10/2013 Find out how individuals can use Reg4ALL to store information, connect with research and advocacy groups, and control their health in a new way. Reg4ALL and Companies | 7/24/2013 Discover how Reg4ALL can help you enroll trials much more quickly. Learn what it has to offer! What’s the future of Reg4ALL? | 8/7/2013 Reg4ALL will be adding all kinds of exciting new features over the next year. Get a sneak peak of what those features will be and how they can help you. Other Events What about Privacy and Progress in Whole Genome Sequencing?<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D2c8815844c%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=b722ffd93cc4c678e4e66dd7795f93db1269c7ddfa9edf603f569f4fa337f443> webinars, based on the Presidential Commission for the Study of Bioethical Issues report, explore its recommendations, look for practical applications, and consider what else might be needed to realize the fruit of whole genome sequencing and respect privacy. Register<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage1.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D3cff4f9ac9%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=1fc52991121536a50d47b4e18cc7760832720f538976caff198177db6327f538> for Reg4ALL webinar series [http://gallery.mailchimp.com/a9e55c5fcbe8bce63e2c83eb9/images/GAlogo_color2.jpg]<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage1.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3Da6b6b49c82%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=6e012b83986502e63c5d63427d86b910aa09f50753041016bbc254bf7d7414cc> Other Events Family health history and genetic/genomic information face similar barriers to use in patient care. Ensuring that it can be accessed and activated within the electronic medical record to drive better patient care is a goal of a Powerful Patient Data: Genomics and Family Health History in Health IT<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage1.com/track/click?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3De509fc2647%26e%3D58aabc845e&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=aeab6f03b9a0ee9469847b5063110f34a5cf4a95c8b8d91f8fc0dc67a99ca357> summit, on May 30-31, 2013 This is Genetic Alliance Network Announcements email list. Subscribe me<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage1.com/subscribe?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D182db72825&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=caca740e90e7dac749fcceb0844bb229a0471d14b9d7dab4d78e18dd5d047646> Genetic Alliance 4301 Connecticut Avenue, N.W. Suite 404 Washington, DC 20008 Add us to your address book<https://urldefense.proofpoint.com/v1/url?u=http://geneticalliance.us5.list-manage1.com/vcard?u%3Da9e55c5fcbe8bce63e2c83eb9%26id%3D182db72825&k=7DHVT22D9IhC0F3WohFMBA%3D%3D%0A&r=QD0MALm7li4xmB3DnzvTKy2CVOWeUGJzsljAyiiNZhA%3D%0A&m=8IaXhyDFDjek0WS8%2FAuTtWNVTcVQBr1ezDrTr3QvYD4%3D%0A&s=e56b2a4971c6999077539d1bee09ba63146c35e48953a61ad40556cf465b7e6f>