Cholangiocarcinoma Foundation's Calendar of Events

unless otherwise stated, all times are in Eastern Time, UTC -4.

Events in July 2020

  • July 9, 2020   (2 events)

    Webinar: Patient Health Data Rights & Privacy


    July 9, 2020  

    Date & Time: Thursday, July 9 from 4-5 PM EDT

    How to Join: https://cholangiocarcinoma-org.zoom.us/webinar/register/2915887867243/WN_x_1qAIgiRSm6CDDJRSf6QQ

    Do you have questions about your health data privacy and your rights to access your own medical records? Join us for an educational webinar with health privacy and security expert Deven McGraw, who is Ciitizen’s Chief Regulatory Officer.

    Deven previously directed U.S. health privacy and security as Deputy Director, Health Information Privacy at the HHS Office for Civil Rights and Chief Privacy Officer (Acting) of the Office of the National Coordinator for Health IT. Widely recognized for her expertise in health privacy, she directed the Health Privacy Project at the Center for Democracy & Technology for six years and led the privacy and security policy work for the HITECH Health IT Policy Committee. She also served as the Chief Operating Officer of the National Partnership for Women and Families. She advised health industry clients on HIPAA compliance and data governance while a partner at Manatt, Phelps & Phillips, LLP.  

    During the webinar, Deven will discuss your rights to access your own health data as a patient, and she will answer all of your questions about medical record access and how you can securely collect and organize your health records with Ciitizen.


    July 9, 2020  

    Date & Time: Thursday, July 9 from 5-6 PM EDT

    How to Join: Register here: https://cholangiocarcinoma-org.zoom.us/webinar/register/4815887867301/WN_edJ7iOuhR8e11JzzVIxvPQ

    What to Bring: Yourself, your favorite party snack / beverage and your driver’s license. That’s all you need to request your records with Ciitizen! 

    Join us for a virtual onboarding event with our partners at Ciitizen to learn how you can use Ciitizen’s platform to take control of your medical data and contribute to important medical research for cholangiocarcinoma. The onboarding party will show you an easy way to take control of your health data and contribute to important research.

    CCF and Ciitizen are partnering to give cholangiocarcinoma patients an easy way to collect and organize their complete health history, free of charge. CCF and Ciitizen recently launched the #MapItForward Real World Genomics Study to allow patients like you to contribute your health records to research and advance our understanding of cholangiocarcinoma. Join us for the virtual onboarding party to learn what it’s all about! 

    Already have a Ciitizen account? You’re still welcome! Join the virtual onboarding party to learn more about Ciitizen and the Real World Genomics Study, or invite a friend to join.

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