WSRGN Family Advocate Tamara Bakewell, Project Coordinator at the Oregon Family to Family Health Information Center, partnered with the WSRGN Family Advocates Work Group and Director to submit a presentation to AMCHP.  The presentation was accepted, and the group will present on “Family Advocacy – Genetics Networks” partnerships at the annual 2018 AMCHP meeting in February.

The most recent meeting was held on November 8-9.  NewSTEPs presented an update about progress towards the newborn screening (NBS) timeliness goals outlined by the Committee.  There were other presentations regarding the evidence review for spinal muscle atrophy and the public health impact of severe combined immunodeficiency, carrier status in the context of NBS, and a review of long term follow up on NBS.  Reports from the Laboratory Standards and Procedures workgroup, Follow-up and Treatment workgroup, and Education and Training workgroup were also presented.

The next ACHDNC meeting will be held February 8-9, 2018.  For more information and links to webcasts of past meetings, click here.

The Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) is accepting nominations for the following three workgroups:

1.  Education and Training
2.  Follow-up and Treatment
3.  Laboratory Standards and Procedures

Self-nominations should include the following information:

1. Statement of interest. Be sure to include the workgroup of interest (please indicate one Workgroup per nomination)
2. Brief description of your expertise and experience that will contribute to the Workgroup
3. CV or Résumé

Nominations must be emailed to Alaina Harris by 11:59 p.m. on November 20, 2017.  Please name the Workgroup in the subject line of the email.  Final decisions regarding Workgroup membership will be made by the Chair of the ACHDNC and the Designated Federal Officer for the ACHDNC by December 2017.

Each member selected can serve on the Workgroup for up to four years (e.g., January 1, 2018 to December 31, 2021).  Past Workgroup members are eligible to apply to serve again.  Any member can voluntarily remove themselves from a Workgroup at any time with a resignation letter to the Chair of the Workgroup.

Members are expected to attend (via webinar or in-person) Workgroup meetings held in conjunction with the quarterly ACHDNC meetings.  Travel and lodging costs are not covered.  In addition, Workgroup members may be asked to participate on monthly teleconferences to work on projects.

For more information on the Committee, please visit the ACHDNC webpage.

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.