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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Jan 31 2018

Next ACHDNC Meeting on February 8

Published by under Announcements

The next meeting of the Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) is scheduled for February 8, 2018.  The meeting is also broadcast by webinar.  Registration for the meeting can be found at: http://www.achdncmeetings.org/registration/

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Jan 31 2018

Redesigned WSRGN Website

Published by under Announcements

The WSRGN website has been renewed and refreshed for the New Year!  Thank you to our own Pauline Mui for all her hard work redesigning the website for our region.  Please take a moment to browse and enjoy the new format.  https://www.westernstatesgenetics.org/

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Nov 24 2017

2017 WSRGN Regional Summit, Planning for 2018

Published by under Announcements

The 2017 Western States Summit in October was a great success, with quite a few new attendees as well as many familiar faces.  Participants in the 2017 WSRGN annual Summit shared their opinions on how and if they will use information discussed at the Summit and the results will be available on the WSRGN website soon.

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