Aug 10 2017

Telegenetics Training

Published by under Announcements

WSRGN is currently holding  the first quarter Telegenetics Training in partnership with the Southwest Telehealth Resource Center.  The trainees are busy doing the on-line modules and the in-person training will be held in Tucson, AZ on August 22.  We will conduct three more trainings by May 31, 2018, so be on the lookout for scheduling announcements!

Please contact michelle@hawaiigenetics.org if you or a genetics provider you know is interested in future training dates.

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Aug 10 2017

WSRGN at the National Society of Genetic Counselors (NSGC) Annual Conference

Published by under Announcements

The WSRGN staff will attending the NSGC Annual Conference in Columbus, OH, September 13-16.  We will be recruiting genetic counselors to participate in the telegenetics training course and introducing counselors in our region to the WSRGN.  If you’re attending the conference, please stop by our exhibit booth.

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Aug 10 2017

Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

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The next SACHDNC meeting is on November 8-9, 2017.

The most recent meeting was held on August 3-4.  Discussion topics included the processes states use to identify and follow up on out of range newborn screening (NBS) results, phase one of the Spinal Muscular Atrophy evidence review, the clinical and public health impact of Critical Congenital Heart Defects, and quality measures in NBS to promote long term follow-up.

For more information and links to webcasts of past meetings, click here.

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Aug 10 2017

Association of Maternal and Child Health Programs (AMCHP)

Published by under General

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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Aug 10 2017

Association of Public Health Laboratories (APHL)

Published by under Announcements

The 2017 APHL Newborn Screening and Genetic Testing Symposium will be held on September 10-13 in New Orleans, LA at the Hilton New Orleans Riverside Hotel.

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Aug 10 2017

Newborn Screening Stories

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NewSTEPs is a national newborn screening project designed to provide data, technical assistance and training to newborn screening programs across the country and assist states with quality improvement initiatives.  NewSTEPs is collecting stories about newborn screening to show the impact of these programs and highlight the important work that NBS programs do every day to save lives.  If you have stories you would like to submit, please send them to Sari Edelman at sari.edelman@aphl.org.

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Aug 10 2017

Newborn Screening Educational Videos for Online Resource Library

Published by under Education

The Colorado School of Public Health (CSPH) in collaboration with the Association of Public Health Laboratories (APHL) through the NewSTEPs 360 project is partnering with the Newborn Screening Clearinghouse housed at Baby’s First Test at Genetic Alliance to develop an online resource library for educational videos developed by and for newborn screening (NBS) programs, partners, and stakeholders.

If you have developed or know of an educational video that isn’t listed below that could be included in the library with appropriate permissions, please email Jaclyn Seisman at jseisman@geneticalliance.org or Joshua Miller at joshua.i.miller@ucdenver.edu and include 1) the name of the video, 2) the URL where the online video can be accessed, 3) a short description on the content of the video, and 4) any instruction on how the video can be accessed if not available to the public.

List of NBS Educational Videos Gathered Thus Far: http://bit.ly/2py5JPV

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May 05 2017

WSGSC to host a Family Advocates Meeting on May 22-23, 2017 in Honolulu, HI

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The WSGSC is hosting a Family Advocates meeting in Honolulu, HI to bring together representatives from Family to Family Health Information Centers and Family Voices (F2F/FV) organizations from each state/territory of the WSGSC, as well as genetics specialists. We will be focusing on the resources (including web and app-based) that are needed by the F2F/FV organizations, and develop a plan to expand these resources amongst the other regional genetics collaboratives.

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May 05 2017

Save the Date: Regional Summit on October 1-3, 2017 in Seattle, WA

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This year’s Regional Summit will be held in Seattle, WA on October 2-3, 2017 with a Family Advocates Work Group meeting scheduled for October 1, 2017.  Save the date on your calendars! We will begin contacting participants with details and travel coordination later this summer.

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May 05 2017

WSGSC and Heartlands Telegenetics Training Session in Tuscon, AZ a Great Success

Published by under Telehealth

The WSGSC and Heartland Genetics held a training session in Tuscon, AZ this April, which was a great success. The purpose of the training, which also includes webinars and completion of a series of online modules prior to the in-person meeting, is to introduce genetics providers to telemedicine equipment and how to incorporate telegenetics into clinical practice.

Please contact michelle@hawaiigenetics.org if you or a genetics provider you know is interested in future training dates.

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