Archive for the 'General' Category

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

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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Oct 17 2019

SACNAS

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The Society for Advancement of Chicanos/Hispanics and Native Americans in Science (SACNAS) is having its National Diversity in STEM Conference from 10/31-11/2 in Honolulu, HI. Late registration closes on 10/29.

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Oct 17 2019

First Annual Hawaii Maternal Telehealth Summit

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Healthcare providers from all over Hawaii recently came together for the First Maternal Telehealth Summit in Honolulu, HI. Speakers included Curtis Lowery, MD of the University of Arkansas and Joseph Humphry, MD of Lanai Community Health Center. Topics included challenges and successes in implementing maternal/fetal medicine telehealth services, and determining what is necessary to start a maternal/fetal medicine telehealth program.

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Oct 17 2019

WSRGN Summit

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The WSRGN Summit was held from 9/26-9/27 in Seattle, Washington. Highlights include:

  • An overview of our activities and projects for this three-year grant cycle to improve access to genetic services for medically underserved populations
  • State/Territory/National Partner highlights regarding access to genetic services: Watch here.
  • Fruitful small group discussions about increasing access to genetic services and integrating family advocates as resources into genetics practices and training programs

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Mar 28 2018

ACHDNC Recommends Adding SMA to the RUSP

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At its quarterly meeting in February, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended that newborn screening for Spinal Muscular Atrophy (SMA) be added to the Recommended Uniform Screening Panel (RUSP).  The recommendation now goes to Health and Human Services Secretary, Alex Azar, for final approval.  The next ACHDNC meeting will be held in-person on May 10-11.

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Mar 28 2018

WSRGN Family Advocates Presentation a Great Success at AMCHP!

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WSRGN Family advocates and staff, Tamara Bakewell, Angela Lindig, Jill McCormick, and Sylvia Mann presented on “Family Advocacy – Genetic Networks” at the Association of Maternal & Child Health Programs Annual Conference in February.  We had a full house for this important topic, with over eighty people in attendance.  AMCHP will be sharing the recording, and it will be made available for all WSRGN partners.

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Mar 28 2018

NHGRI 15 for 15 Celebration

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April 2018 will mark the 15th anniversary of the completion of the Human Genome Project. To commemorate this milestone and the genomic advances that have been made since 2003, the National Human Genome Research Institute (NHGRI) will launch the ’15 for 15′ Celebration – unveiling 15 ways that genomics has and will continue to transform our world.

The WSRGN will be linking to the activities for the 15 for 15 Celebration on our website and Facebook page.  Starting April 5th, we will reveal a new advance each day leading up to DNA Day on April 25th, so stay tuned for more!

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Aug 10 2017

Association of Maternal and Child Health Programs (AMCHP)

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As Congress appears to move on from attempts to repeal and replace the Affordable Care Act, AMCHP will be advocating for the timely reauthorization of important health programs slated to expire September 30 such as MIECHV (the home visiting program), Community Health Centers, and Family to Family Information Centers.  For more information about AMCHP and their ongoing advocacy efforts, click here.

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