Mar 28 2018

NHGRI 15 for 15 Celebration

Published by under General

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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Mar 28 2018

ACMG Annual Clinical Genetics Meeting

Published by under Announcements

The American College of Clinical Genetics and Genomics annual meeting will be held in Charlotte, NC on April 10-14.  Sessions focus on both research and clinical topics that promote the science and the practice of clinical genetics and genomics.  Attendees will learn about the latest discoveries in the etiology and the pathogenesis of genetic disorders, the latest developments in genetic testing and screening, the laboratory’s role in the diagnosis of genetic disorders, the treatment of genetic disorders in children and adults, the delivery of genetic services, and more.

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Mar 28 2018

Save the Date for the 2018 WSRGN Regional Summit!

Published by under Announcements

The 2018 WSRGN Regional Summit has been scheduled for Thursday and Friday, October 11th-12th, 2018 in Seattle, WA.  Please note that the Family Advocates meeting will be held on October 10th, 2018.  We are in the process of reviewing the invited attendees list to ensure that we are including the broad representation that we need.

We will be sending more information about the Summit, including the agenda, in future emails. We will also be contacting you in early September to arrange for your travel.   Please feel free to email Sylvia Mann (sylvia@hawaiigenetics.org) or Pauline Mui (Pauline@hawaiigenetics.org) if you have any questions about this year’s Regional Summit. We hope to see all of you in Seattle in October 2018!!

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Jan 31 2018

MCHB National Survey of Children’s Health

Published by under Education

In 2016, the Maternal and Child Health Bureau (MCHB) integrated the National Survey of Children’s Health and National Survey of Children with Special Health Care Needs.  The results of this survey, including information on if a parent has ever been told by a provider that their child has a genetic condition, were recently published in the HRSA Data Resource Center.  Explore the data at: http://www.childhealthdata.org/learn/NSCH?mc_cid=b3d4cf630a&mc_eid=770ca46dd4

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Jan 31 2018

November NewSTEPs New Disorders Webinar

Published by under Education

APHL assists state programs to implement newborn screening for Pompe, MPS I and X-ALD through NewSTEPs and the New Disorders Implementation Project. During the first webinar of this series, the Iowa Department of Public Health and the Tennessee Department of Health presented progress on their activities.

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Jan 31 2018

NewSTEPs Resource Library

Published by under Education

As a part of their newly updated website, NewSTEPs developed a resource library that can be filtered by disorder, topic, and type.  The disorders menu highlights conditions that are newer to the Recommended Uniform Screening Panel.  The topic menu includes areas such as follow-up, quality improvement, policy, and timeliness.  The type menu refers to the format of the resource, including webinars, policy statements, reports, and educational tools.  Submissions of additional resources are encouraged and accepted as the library continues to grow. Please direct any submissions to Sari Edelman at sari.edelman@aphl.org.

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Jan 31 2018

Family Experiences with Newborn Screening Follow Up

Published by under Education

This NewSTEPs Short Term Follow Up webinar featured a state spotlight on the California newborn screening program followed by presentations on parent experiences with short term follow up from Allison Wood, parent of a child with GA-1, and Natasha Bonhomme, Chief Strategy Officer at Genetic Alliance and Director of Baby’s First Test.

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Jan 31 2018

State Newborn Screening Legislation Tracking

Published by under Education

APHL recently launched the State NBS Bills webpage to provide an interactive platform to monitor newborn screening legislation across the US, such as new additions to state NBS panels and fee increases. Users can click on highlighted states to view proposed and enacted legislation, and bill information is automatically updated as it becomes available. This tool is restricted to APHL staff, NBS program personnel, state laboratory directors and federal partners. 

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Jan 31 2018

Next Telegentics Training, February 2018

Published by under Telehealth

The WSRGN will be holding the next Telegenetics Training in Tucson, AZ in February 2018.  The training includes a series of online modules and two webinars along with a mandatory one-day in-person session.  There are two dates to choose from for the one-day in-person training in February, the 15th or the 16th.  Please let us know if there are any genetic counselors you think would benefit from this training.

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Jan 31 2018

AMCHP Annual Conference, February 10-13

Published by under Announcements

The Association of Maternal & Child Health Programs Annual Conference will be held on February 10-13 in Crystal City, VA.  AMCHP is a national resource, partner and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs.  WSRGN Family advocates, led by Tamara Bakewell, Angela Lindig, and Jill McCormick, will be presenting on “Family Advocacy – Genetic Networks” on Sunday, February 11th at 1:30 pm.

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