Jan 16 2020

New Severe Combined Immunodeficiency (SCID) resource for families

Published by under Announcements

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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Jan 16 2020

Save the Date! 2020 National Newborn Screening Meetings

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  • National Meeting on Spinal Muscular Atrophy (SMA) and X-linked Adrenoleukodystrophy (x-ALD) Newborn Screening | April 15–16, Washington, DC
     
  • Short Term Follow-Up National Meeting | May 12–13, Seattle, Washington
     
  • Continuous Quality Improvement National Meeting | June 24–26, Washington, DC
  • Newborn Screening & Genetic Testing Symposium | October 18–22, Des Moines, Iowa

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Jan 16 2020

Upcoming Educational Webinars

Published by under Education

  • January 23, 1:00 pm ET – Rural Health Research Gateway:Rural Disparities in Health and Healthcare by Race and Ethnicity. This webinar will address differences in county-level premature death, individual-level differences in health status and differences in healthcare access and use by county racial and ethnic composition. Register.
  • January 27, 10:00 am ET – Center for Disease Control – Ethical, Legal, and Social Implications of Human Genomics Research: Past, Present and Future. https://www.cdc.gov/genomics/events/ELSI_2020.htm

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Nov 27 2019

Save the Date! 2020 National Newborn Screening Meetings

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Save the Date! 2020 National Newborn Screening Meetings

  • National Meeting on Spinal Muscular Atrophy (SMA) and X-linked Adrenoleukodystrophy (x-ALD) Newborn Screening | April 15–16, Washington, DC
     
  • Short Term Follow-Up National Meeting | May 12–13, Seattle, Washington
     
  • Continuous Quality Improvement National Meeting | June 24–26, Washington, DC

  • Newborn Screening & Genetic Testing Symposium | October 18–22, Des Moines, Iowa

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Nov 27 2019

APHL collaboration with IDF and RTI International to improve outcomes for infants SCID

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APHL is collaborating with the Immune Deficiency Foundation (IDF) and RTI International to improve outcomes for infants with severe combined immunodeficiency (SCID) detected through newborn screening. 

APHL is able to provide screening implementation support via training workshops, focused site reviews, webinars and direct funding/implementation awards. We are also able to provide access to educational resources as needed for laboratory and follow-up professionals, as well as link you to our partners who can provide broader educational resources.

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Nov 27 2019

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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Nov 27 2019

NCC Resource Repository

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The Resource Repository is a library of resources developed by the NCC, Regional Genetics Networks, and Family Center to increase access to quality genetic services for medically underserved populations.  There are also links to the ACT Sheets and Algorithms, as well as a nationwide directory of clinical genetics services.

Explore resources developed by the NCC, the seven regions, NGEFSC, and other national partners.  These resources can be sorted by topic, including: 

    • Care Coordination
    • Consumer Advocacy
    • Disease Specific
    • Education
    • Family Health History
    • Genetic Service System
    • Healthcare Access and Financing
    • Long-Term Follow-Up
    • Medical Food
    • Medical Home
    • Newborn Screening
    • Transition

Resources can also be sorted by target audience, such as Patients and/or Families, Genetics Providers, Non-Genetics Providers, Public Health, Educators, Policymakers, and Insurers.

https://nccrcg.org/resources/#Resource

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Nov 27 2019

New Clinical Services Directory Is Now Live!

Published by under Announcements

NCC is excited to announce that the new clinical services directory is now live! The directory can be found at clinics.acmg.net.  You should check to make sure your listing is accurate.

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Nov 27 2019

Time is Running Out! Let Your Voice Be Heard on the 2019 Medical Geneticist Workforce Survey

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Have you received an email from ABMGG about the “Current Practice in Medical Genetics Survey” but haven’t had a chance to complete it? Be sure to complete the survey before the deadline, December 1st!

Your participation will provide crucial information to ABMGG, ACMG, and the Government Accountability Office (GAO) that will help inform a report on the current state of the medical genetics workforce.

The survey link can be found in emails sent by ABMGG. If you did not receive an email with the survey link and believe you should have, please contact abmgg@abmgg.org. If you have any questions about the survey design or how the data will be used, please contact Alisha Keehn or Megan Lyon.

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Oct 17 2019

NSGC

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The National Society of Genetic Counselors Annual Conference takes place 11/5-11/8 in Salt Lake City, UT. Registration is still open.  The WSRGN will be helping man the National Coordinating booth.  Stop by if you are attending the conference.

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