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X-WR-CALNAME:Genetics Policy Hub
X-ORIGINAL-URL:https://geneticspolicy.nccrcg.org
X-WR-CALDESC:Events for Genetics Policy Hub
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DTSTART:20230312T070000
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230210T120000
DTEND;TZID=America/New_York:20230210T130000
DTSTAMP:20260606T183146
CREATED:20220831T191653Z
LAST-MODIFIED:20220831T193154Z
UID:3370-1676030400-1676034000@geneticspolicy.nccrcg.org
SUMMARY:ELSI Friday Forum Seminar Series
DESCRIPTION:ELSI Friday Forum is a monthly one-hour seminar series featuring topics on the ethical\, legal\, and social implications (ELSI) of genetics and genomics research.  Join us from 12:00-1:00pm ET / 9:00-10:00am PT on the second Friday of each month for talks and panels on a broad array of issues\, explored through an ELSI lens. \n\n\n\nEach hour-long forum will be immediately followed by a half-hour informal networking session for audience members who would like to continue the discussion.  A zoom link to the networking session will be provided in the Zoom Chat before the end of each forum and emailed to all registrants. \n\n\n\nEach forum will end with a Q&A with the audience and speakers: please bring your questions\, expertise\, and opinions to the debate!  For those who cannot attend the live event\, each session will be recorded and archived on the ELSIhub Video page.
URL:https://geneticspolicy.nccrcg.org/event/elsi-friday-forum-seminar-series%ef%bf%bc-3/
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230308T130000
DTEND;TZID=America/New_York:20230308T140000
DTSTAMP:20260606T183146
CREATED:20230307T201859Z
LAST-MODIFIED:20230307T201900Z
UID:3585-1678280400-1678284000@geneticspolicy.nccrcg.org
SUMMARY:Paid Family Caregiving for Children with Medical Complexity and Disabilities
DESCRIPTION:Edit Event \n\n\n\n\n\n\n\n\n\n\n\n \n\n\n\nPediatric Home Health care is in crisis. Children with medical complexity require a substantial amount of medical care and activities-of-daily-living support to live at home. However\, due to a shrinking pool of available home health care workers and narrow state eligibility requirements for services\, most of their care is increasingly delivered by families without pay. In response\, the option to pay family caregivers for their children’s medical labor is gaining national traction. This webinar will provide a brief overview of laws that govern care for this population and then spotlight specific models of paid family caregiving and how they have been recently expanded in several states. Join us to explore a policy solution to pay families to provide home health care to their children with medical complexity and disabilities. Live captioning will be available. \n\n\n\nSpeakers\n\n\n\nCara Coleman\, JD\, MPH \n\n\n\nFamily Voices \n\n\n\nCara Coleman works for Family Voices National and is the author of “I am Justice\, Hear Me Roar” about her daughter\, Justice\, with medical complexity and disabilities. She is Associate Editor for Family Partnerships\, Executive Editorial Board of Pediatrics. In the past\, Cara has worked as an adult health specialist\, a case manager for homeless pregnant women\, a counselor in a shelter for battered women\, a law clerk for a judge\, an immigration subject matter consultant\, and an attorney serving low-income immigrants. \n\n\n\nCarolyn Foster\, MD\, MS \n\n\n\nNorthwestern University/Lurie Children’s Hospital of Chicago \n\n\n\nDr. Carolyn Foster is an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and an attending physician at Ann & Robert H. Lurie Children’s Hospital of Chicago in primary and complex care. As a primary investigator of the Foster Health Lab\, she holds both NIH and foundation funding to improve home and community-based services for children with medical complexity and their families\, with research that spans intervention development\, factors affecting patient and family wellbeing\, and how state-level policies impact care provision. The Foster Health Lab’s mission is to improve the health of children with medical complexity\, while reducing health-care related stress for their families\, through family-partnered research and innovative clinical programming. \n\n\n\nNannette Salasek \n\n\n\nHealth Care Systems Administrator\, Raising Special Kids \n\n\n\nFor 14 years Nannette Salasek has worked at Raising Special Kids as the Health Care Systems Administrator\, providing families support\, and training medical professionals on the principles of Family Centered Care and how to best care for families that have children with special health care needs. In addition to her work at Raising Special Kids\, Nannette is a licensed Social Worker and serves on the Family Advisory Council at Phoenix Children’s Hospital. \n\n\n\nNannette and her husband have 6 beautiful children. Their lives were changed forever when their third child was born with Spina Bifida. Annie\, now 19 years old\, is a happy and independent young lady who bravely takes on the many challenges of living with Spina Bifida. Nannette is passionate about providing support to families and letting them know they are not alone in the journey of advocacy for their children with special needs. \n\n\n\nBill Sczepanski \n\n\n\nVP\, Government Relations\, Team Select Home Care \n\n\n\nBorn and raised in St. Louis\, Missouri\, Bill Sczepanski has over a decade of legislative experience in the home health space and has worked in the home care industry for nearly twenty years. Currently residing in Phoenix\, Arizona\, Bill is the Vice President of Government Relations with Team Select Home Care. In his current role\, Bill works closely with the President/CEO of Team Select Home Care\, parents\, providers\, and legislators to create change for medically fragile families deserving quality care at home. Bill is well-versed in Medicare\, Medicaid\, Accreditation Commission for Health Care (ACHC)\, Health Insurance Portability and Accountability Act (HIPAA)\, Community Health Accreditation Partner (CHAP)\, Joint Commission on Accreditation of Healthcare Organizations (JCAHO)\, and Occupational Health and Safety Administration (OSHA) regulations. He is proud to be a resource for others around him.
URL:https://geneticspolicy.nccrcg.org/event/paid-family-caregiving-for-children-with-medical-complexity-and-disabilities/
ATTACH;FMTTYPE=image/png:https://geneticspolicy.nccrcg.org/wp-content/uploads/2023/03/logo.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230310T120000
DTEND;TZID=America/New_York:20230310T130000
DTSTAMP:20260606T183146
CREATED:20220831T191926Z
LAST-MODIFIED:20220831T193216Z
UID:3374-1678449600-1678453200@geneticspolicy.nccrcg.org
SUMMARY:ELSI Friday Forum Seminar Series
DESCRIPTION:ELSI Friday Forum is a monthly one-hour seminar series featuring topics on the ethical\, legal\, and social implications (ELSI) of genetics and genomics research.  Join us from 12:00-1:00pm ET / 9:00-10:00am PT on the second Friday of each month for talks and panels on a broad array of issues\, explored through an ELSI lens. \n\n\n\nEach hour-long forum will be immediately followed by a half-hour informal networking session for audience members who would like to continue the discussion.  A zoom link to the networking session will be provided in the Zoom Chat before the end of each forum and emailed to all registrants. \n\n\n\nEach forum will end with a Q&A with the audience and speakers: please bring your questions\, expertise\, and opinions to the debate!  For those who cannot attend the live event\, each session will be recorded and archived on the ELSIhub Video page.
URL:https://geneticspolicy.nccrcg.org/event/elsi-friday-forum-seminar-series-4/
ATTACH;FMTTYPE=image/png:https://geneticspolicy.nccrcg.org/wp-content/uploads/2022/08/ELSIhubCERA-logo-2-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230404T120000
DTEND;TZID=America/New_York:20230404T120000
DTSTAMP:20260606T183146
CREATED:20230309T175340Z
LAST-MODIFIED:20230309T175340Z
UID:3592-1680609600-1680609600@geneticspolicy.nccrcg.org
SUMMARY:Genetics Policy Hub Webinar Series: Medical Foods
DESCRIPTION:On April 4 at 12 PM ET\, Genetics Policy Hub is partnering with the Southeast Regional Genetics Networks (SERN) to share the latest information about medical foods coverage from across the United States. By joining the webinar\, you will: \n\n\n\nDescribe the importance of medical foods coverage.Identify current policies related to medical foodsApply lessons in improving medical foods coverage in your work.\n\n\n\n \n\n\n\nSpeakers: \n\n\n\nRani Singh\, PhD\, RD\, LDSERN Project DirectorProfessor\, Emory University \n\n\n\nMegan Lyon\, MPHNCC Co-Project Director
URL:https://geneticspolicy.nccrcg.org/event/genetics-policy-hub-webinar-series-medical-foods/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230412T140000
DTEND;TZID=America/New_York:20230412T150000
DTSTAMP:20260606T183146
CREATED:20230405T162406Z
LAST-MODIFIED:20230405T162406Z
UID:3675-1681308000-1681311600@geneticspolicy.nccrcg.org
SUMMARY:Arizona Telemedicine Program Webinar Series | Navigating Telehealth Legislative and Policy Changes Beyond the Public Health Emergency
DESCRIPTION:The practice and delivery of health care is changing with an emphasis on improving quality\, safety\, efficiency and access to care. Telemedicine can help you achieve these goals! The Arizona Telemedicine Program and Southwest Telehealth Resource Center invite you to a free one-hour CME webinar on the implementation and practice of telemedicine. \n\n\n\nNavigating Telehealth Legislative and Policy Changes Beyond the Public Health Emergency \n\n\n\nJoin us to learn about the latest in telehealth legislation and policy changes. \n\n\n\nThis webinar is made possible through funding provided by Health Resources and Services Administration\, Office for the Advancement of Telehealth (U1U42527). \n\n\n\n \n\n\n\nSpeakers: \n\n\n\nTara Sklar\, JD\, MPH \n\n\n\nFaculty Director \n\n\n\nArizona Law \n\n\n\nSklar is the faculty director of the Health Law & Policy Program at Arizona Law. She also holds appointments as senior advisor for Telehealth Law & Policy with the Arizona Telemedicine Program and for Innovations in Healthy Aging with the University of Arizona Health Sciences. Sklar currently serves as a telehealth policy consultant with the Department of Health and Human Services\, Health Resources & Services Administration in the Office for the Advancement of Telehealth.
URL:https://geneticspolicy.nccrcg.org/event/arizona-telemedicine-program-webinar-series-navigating-telehealth-legislative-and-policy-changes-beyond-the-public-health-emergency/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230414T120000
DTEND;TZID=America/New_York:20230414T130000
DTSTAMP:20260606T183146
CREATED:20220831T192147Z
LAST-MODIFIED:20220831T193241Z
UID:3377-1681473600-1681477200@geneticspolicy.nccrcg.org
SUMMARY:ELSI Friday Forum Seminar Series
DESCRIPTION:ELSI Friday Forum is a monthly one-hour seminar series featuring topics on the ethical\, legal\, and social implications (ELSI) of genetics and genomics research.  Join us from 12:00-1:00pm ET / 9:00-10:00am PT on the second Friday of each month for talks and panels on a broad array of issues\, explored through an ELSI lens. \n\n\n\nEach hour-long forum will be immediately followed by a half-hour informal networking session for audience members who would like to continue the discussion.  A zoom link to the networking session will be provided in the Zoom Chat before the end of each forum and emailed to all registrants. \n\n\n\nEach forum will end with a Q&A with the audience and speakers: please bring your questions\, expertise\, and opinions to the debate!  For those who cannot attend the live event\, each session will be recorded and archived on the ELSIhub Video page.
URL:https://geneticspolicy.nccrcg.org/event/elsi-friday-forum-seminar-series%ef%bf%bc-4/
ATTACH;FMTTYPE=image/png:https://geneticspolicy.nccrcg.org/wp-content/uploads/2022/08/ELSIhubCERA-logo-2-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230512T120000
DTEND;TZID=America/New_York:20230512T130000
DTSTAMP:20260606T183146
CREATED:20220831T192334Z
LAST-MODIFIED:20220831T192427Z
UID:3379-1683892800-1683896400@geneticspolicy.nccrcg.org
SUMMARY:ELSI Friday Forum Seminar Series
DESCRIPTION:ELSI Friday Forum is a monthly one-hour seminar series featuring topics on the ethical\, legal\, and social implications (ELSI) of genetics and genomics research.  Join us from 12:00-1:00pm ET / 9:00-10:00am PT on the second Friday of each month for talks and panels on a broad array of issues\, explored through an ELSI lens. \n\n\n\nEach hour-long forum will be immediately followed by a half-hour informal networking session for audience members who would like to continue the discussion.  A zoom link to the networking session will be provided in the Zoom Chat before the end of each forum and emailed to all registrants. \n\n\n\nEach forum will end with a Q&A with the audience and speakers: please bring your questions\, expertise\, and opinions to the debate!  For those who cannot attend the live event\, each session will be recorded and archived on the ELSIhub Video page.
URL:https://geneticspolicy.nccrcg.org/event/elsi-friday-forum-seminar-series%ef%bf%bc-5/
ATTACH;FMTTYPE=image/png:https://geneticspolicy.nccrcg.org/wp-content/uploads/2022/08/ELSIhubCERA-logo-2-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230609T120000
DTEND;TZID=America/New_York:20230609T130000
DTSTAMP:20260606T183146
CREATED:20220831T192617Z
LAST-MODIFIED:20220831T192716Z
UID:3382-1686312000-1686315600@geneticspolicy.nccrcg.org
SUMMARY:ELSI Friday Forum Seminar Series
DESCRIPTION:ELSI Friday Forum is a monthly one-hour seminar series featuring topics on the ethical\, legal\, and social implications (ELSI) of genetics and genomics research.  Join us from 12:00-1:00pm ET / 9:00-10:00am PT on the second Friday of each month for talks and panels on a broad array of issues\, explored through an ELSI lens. \n\n\n\nEach hour-long forum will be immediately followed by a half-hour informal networking session for audience members who would like to continue the discussion.  A zoom link to the networking session will be provided in the Zoom Chat before the end of each forum and emailed to all registrants. \n\n\n\nEach forum will end with a Q&A with the audience and speakers: please bring your questions\, expertise\, and opinions to the debate!  For those who cannot attend the live event\, each session will be recorded and archived on the ELSIhub Video page.
URL:https://geneticspolicy.nccrcg.org/event/elsi-friday-forum-seminar-series%ef%bf%bc-6/
ATTACH;FMTTYPE=image/png:https://geneticspolicy.nccrcg.org/wp-content/uploads/2022/08/ELSIhubCERA-logo-2-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230714T120000
DTEND;TZID=America/New_York:20230714T130000
DTSTAMP:20260606T183146
CREATED:20220831T192852Z
LAST-MODIFIED:20220831T192908Z
UID:3386-1689336000-1689339600@geneticspolicy.nccrcg.org
SUMMARY:ELSI Friday Forum Seminar Series
DESCRIPTION:ELSI Friday Forum is a monthly one-hour seminar series featuring topics on the ethical\, legal\, and social implications (ELSI) of genetics and genomics research.  Join us from 12:00-1:00pm ET / 9:00-10:00am PT on the second Friday of each month for talks and panels on a broad array of issues\, explored through an ELSI lens. \n\n\n\nEach hour-long forum will be immediately followed by a half-hour informal networking session for audience members who would like to continue the discussion.  A zoom link to the networking session will be provided in the Zoom Chat before the end of each forum and emailed to all registrants. \n\n\n\nEach forum will end with a Q&A with the audience and speakers: please bring your questions\, expertise\, and opinions to the debate!  For those who cannot attend the live event\, each session will be recorded and archived on the ELSIhub Video page.
URL:https://geneticspolicy.nccrcg.org/event/elsi-friday-forum-seminar-series%ef%bf%bc-7/
ATTACH;FMTTYPE=image/png:https://geneticspolicy.nccrcg.org/wp-content/uploads/2022/08/ELSIhubCERA-logo-2-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230926T140000
DTEND;TZID=America/New_York:20230926T140000
DTSTAMP:20260606T183146
CREATED:20230913T173121Z
LAST-MODIFIED:20230913T173148Z
UID:3874-1695736800-1695736800@geneticspolicy.nccrcg.org
SUMMARY:Genetics Policy Hub Webinar Series- Newborn Screening
DESCRIPTION:On September 26\, 2023\, at 2 PM ET\, the fourth Genetics Policy Hub webinar will be held to share the latest policy information related to newborn screening and to celebrate Newborn Screening Awareness Month! Join us for this free one-hour webinar to: \n\n\n\n\nExplain the current ways in which newborn screening policy is set across the United States;\n\n\n\nDescribe how you can find information about newborn screening policy in the Genetics Policy Hub; and\n\n\n\nIdentify new and emerging policy trends in newborn screening.
URL:https://geneticspolicy.nccrcg.org/event/genetics-policy-hub-webinar-series-newborn-screening/
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