Archive for the 'Announcements' Category

Jul 29 2020

The Minority Genetic Professionals Network (MGPN) supporting minority students and practicing genetics professionals

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There is no better time than now for racially and ethnically diverse students and professionals to join the MGPN. The MGPN is hosting several events in the coming months to support members in this time of isolation. These include workshops in healing from racial trauma, roll-out of a new-and-improved mentorship program, a virtual career fair, webinars featuring professional speakers, and much more.

Go to minoritygenetics.org to resister and find more information.

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Jul 29 2020

Save the Date for APHL 2020 NBS Virtual Symposium

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In place of APHL’s traditional in-person Newborn Screening Symposium, they are hosting the APHL 2020 Newborn Screening Virtual Symposium, an online event that will address state, national and international newborn screening, genetic testing and policy issues important to public health newborn screening systems. The virtual symposium will feature live and on-demand content, an interactive poster hall, an opportunity to engage with industry partners and representatives, as well as fun and engaging activities! Sessions will run from October 20 – November 12, with up to three sessions per day on Tuesdays and Thursdays (excluding holidays). Sessions will continue to be made available to attendees after the live event concludes. Access to e-poster presentations and the virtual exhibitor hall will be accessible throughout the symposium.

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Jul 29 2020

Save the Date: Advancing the Response to COVID-19 for Minority Communities

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The HHS Office of Minority Health (OMH)will host a virtual symposium on Thursday, September 17, 2020 to highlight state, Tribal, territorial and community-based efforts to address COVID-19 among racial and ethnic minority populations. The Advancing the Response to COVID-19: Sharing Promising Programs and Practices for Racial and Ethnic Minority Communities virtual symposium aims to support and disseminate promising practices, programs and strategies for combating COVID-19, especially in communities of color.

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Jul 29 2020

Advisory Committee for Heritable Disorders in Newborns and Children August meeting

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The next meeting for the Advisory Committee on Heritable Disorders in Newborns and Children will be held via webcast on Thursday, August 6, 2020, from 1:00 PM – 4:05 PM Eastern Time (ET) and Friday, August 7, 2020, from 10:00 AM – 1:30 PM ET. Meeting times are subject to change.

Registration: This meeting will be open to the public but advance registration is required. Please register online <https://www.cvent.com/d/jnq529> by 12:00 p.m. ET on August 5, 2020. For technical problems gaining access to the registration website, please email Amy Lang.

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Jul 29 2020

WSRGN Telegenetics Training Goes Virtual

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The WSRGN telehealth training is going totally virtual! Training dates will begin in the Fall.  Please contact Austin Bland (austin@hawaiigenetics.org) for more information.

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Jul 29 2020

WSRGN Telehealth Videos for Providers and Patients

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Using our experience in training providers to use telehealth and telegenetics, we have created short best practices and “how-to” videos for patients and providers.

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Feb 19 2020

FDA Authorizes First Test to Aid in Newborn Screening for Duchenne Muscular Dystrophy

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Earlier this month, the U.S. Food and Drug Administration authorized the marketing of the first test to aid in newborn screening for Duchenne muscular dystrophy, a rare genetic disorder characterized by progressive muscle loss. To read more, click here

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Jan 16 2020

Public Health Informatics Newborn Screening Position Description Toolkit

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The APHL NBS Health Information Technology (HIT) Workgroup identified the need for NBS programs to be able to successfully recruit qualified public health informatics candidates. The workgroup developed four editable, examples of position descriptions within this toolkit. Visit NewSTEPs.org for more HIT-related resources

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Jan 16 2020

Call for Abstracts – 2020 Newborn Screening Symposium

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Newborn Screening Symposium (NBS2020) will be held in Des Moines, IA from October 18–22, 2020. They are looking for abstract, oral presentations and posters/roundtables submissions, which may be completed online via the abstract submission site. Full details on this process are contained in the Call for Abstracts. The deadline for abstract submission is February 28, 2020. 

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Jan 16 2020

New Severe Combined Immunodeficiency (SCID) resource for families

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The Immune Deficiency Foundation launched their new website, SCID Compass, to support parents of babies with severe combined immunodeficiency. SCID is newborn screening condition in which the body is not able to fight off serious and life-threatening infections. The website provides detailed information about SCID, including an in-depth explanation of SCID, treatment options, and advice on how to care for a child with SCID. It also shares family stories and information on support services. 

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