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.

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.

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.

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.

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.

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.

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.

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.

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.

The next meeting of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) is scheduled for May 11-12, 2017. This meeting will be available in-person in Rockville, MD and via webinar. For more information, go to: https://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/