Nov 24 2017

Cystic Fibrosis NBS Timeliness: IRT/IRT/DNA

Published by under Education

This webinar was part of a NewSTEPs 360 newborn screening, cystic fibrosis community outreach and is posted here.  It included an interactive problem solving/idea sharing session on two-screen states performing IRT/IRT/DNA panels, with a primary focus on states that are currently using this algorithm. States new or soon to be new to this algorithm will benefit from this webinar, as well as programs that have recently implemented changes to their CF algorithms.

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Nov 24 2017

October SCID Quarterly Webinar

Published by under Education

This NewSTEPs webinar features an update on SCID newborn screening nationally and lessons learned from the SCID In-Person Meeting and is posted here.  Newborn screening experiences were also shared from the Utah and Tennessee newborn screening programs.

Southeast Regional Genetics Network Videos on the Emory University Metabolic Camp

Emory University holds an annual summer Metabolic Camp for adolescent girls and young women with inherited metabolic disorders, including phenylketonuria (PKU) and maple syrup urine disease (MSUD).  The research-based camp helps adolescent girls and young women learn how to care for their own health, and how to assure that they have healthy children, when and if they decide to start their own families.  Two videos about the program were developed by the Southeast Regional Genetics Network (SERN) and are available here and here.

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Nov 15 2017

Short Term Follow-Up Webinar: Spinal Muscular Atrophy (SMA)

Published by under Education

A NewSTEPs webinar on short-term follow up for SMA found on newborn screening is posted here.

The webinar presents clinical background on SMA, updates about the recently approved treatment nusinersen, and information on pilot screening studies on SMA in New England and Wisconsin.

The webinar also includes a program spotlight NBS program in Puerto Rico prior to Hurricane Maria.

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Aug 21 2017

New Funding and Name for the Western States!

Published by under Announcements

We have received the award to continue our regional genetics work from the Health Resources and Services Administration for the next three years.  Of course, the continuation of funding for each of the future years depends on the federal budget decisions.  With the new funding, the Regional Genetic Services Collaboratives have transitioned to become the Regional Genetic Networks, and our new name is the Western States Regional Genetics Network, or the WSRGN.  The newsletter has our new logo and you can see our new banner on the website thanks to Pauline.

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Aug 21 2017

WSRGN Regional Summit 2017

Published by under Announcements

Please remember to save the date for October 2-3, 2017 in Seattle, WA.  Family Advocates meeting is Sunday, October 1.  Pauline will be sending out travel information soon and the tentative agenda should be posted by the end of this week.

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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

Published by under Announcements

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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