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/

The July edition of the NCC Collaborator is available! This edition of the NCC Collaborator f.  To view the focuses on consumer engagement and family advocate involvement throughout the different regions. To vie this issue, click here.

This year’s WSGSC Regional Summit will be held at the Seattle Public Library.  Please mark your calendars for September 26-27, 2016.  Pauline will be contacting our stakeholders in August to start travel coordination.

WSGSC provided consultation to the National Coordinating Center RSSM Work Group on the Regional Support Services Model Recommendation Brief to the Health Resources and Services Administration.  Thank you to the Collaborative partners who provided input and reviewed the draft report and submitted comments.  The final report is now available here.

The next meeting of the Advisory Committee on Heritable Disorders in Newborns and Children will be held on May 9 and 10^th, 2016. The meeting will be held at the 5635 Fishers Lane, Rockville, MD 20852. The meeting will also be webcasted.

Registration: The meeting will be open to the public with attendance limited to space availability.  Participants also have the option of viewing the meeting via webcast.  Whether attending in-person or via webcast, all participants must register for the meeting.  The registration link is https://blsmeetings.net/achdncMay2016/index.cfm. The registration deadline is Friday, April 29, 2016, 11:59 PM Eastern Time. For technical problems gaining access to the registration website, please email Paul Brown at pbrown@seamoncorporation.com

Agenda:  The Committee will hear presentations and discussions on topics including newborn screening long-term follow-up and prenatal education regarding newborn screening bloodspots.  The Committee will also review draft reports from the Pilot Study and Cost Analysis workgroups and hear updates from the Committee’s subcommittees on Laboratory Standards and Procedures, Follow-up and Treatment, and Education and Training.  Tentatively, the Committee is expected to review and/or vote on whether or not the nominated condition Guanidinoacetate Methyltransferase deficiency should be referred for a full evidence-based review.

Agenda items are subject to change as necessary or appropriate.  The agenda, webinar information, Committee Roster, Charter, presentations, and other meeting materials will be available on the Committee’s website at http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders.

Public Comments:  Members of the public may present oral comments and/or submit written comments.  Comments are part of the official Committee record.  Advance registration is required to present oral comments and/or submit written comments. The registration link is https://blsmeetings.net/achdncMay2016/index.cfm.

The registration deadline for public comments is Friday, April 29, 2016 11:59 PM Eastern Time.  To ensure that all individuals who have registered to make oral comments can be accommodated, the allocated time may be limited.  Individuals who are associated with groups or have similar interests may be requested to combine their comments and present them through a single representative.  No audiovisual presentations are permitted.

Written comments must be received by the deadline of April 21, 2016 11:59PM Eastern Time in order to be included in the May meeting briefing book. Written comments should identify the individual’s name, address, email, telephone number, professional or business affiliation, type of expertise (i.e., parent, researcher, clinician, public health, etc.), and the topic/subject matter of comments.

Contact Person:  For additional information or questions on public comments, please contact Alaina Harris, Maternal and Child Health Bureau, Health Resources and Services Administration, Room 18W66, 5600 Fishers Lane, Rockville, Maryland 20857; email: aharris@hrsa.gov.

Baby’s First Test is requesting applications for the 2016 Consumer Task Force on Newborn Screening. This task force was created to engage relevant stakeholders with an interest in newborn screening policies, activities, and current events. This program includes training on issues relevant to newborn screening and project development targeting groups who typically are under-informed about the importance of newborn screening.  Task Force members will gain the skills and knowledge to work on newborn screening programs and other maternal and child health-related issues. Baby’s First Test is seeking Consumer Task Force members with a desire to learn about and to make a positive impact in newborn screening and maternal and child health.  No experience is necessary.

Please click HERE for the application.

Again, the deadline for receipt of full proposals is 6:00 p.m. EDT on February 10, 2016.

All inquiries regarding the Consumer Task Force should be submitted to Natasha Bonhomme at Natasha@BabysFirstTest.org.

The NCC Regional Support Service Model Workgroup has created a draft recommendation, to be submitted to the Health Resources Service Administration (HRSA) that identifies current gaps and barriers in genetic services and proposes solutions to these issues for 2017 and beyond. The draft recommendations, as well as instructions on how to submit comments, will be available starting February 1st and open through February 26th.
As a part of the comment period, three webinars will be hosted in the beginning of February to inform a wide variety of stakeholders of the process undertaken the RSSM workgroup and to discuss the draft recommendations. Each webinar will be archived and available on this site immediately after the completion of the webinar.
To register for one of these webinars, please follow the link below
http://www.nccrcg.org/NCCRCG/Workgroups/Regional_Support_Service_Model/NCCRCG/Workgroups/Regional_Support_Service_Model_Workgroup/Recommendation.aspx

The January edition of the NCC Collaborator is available! This edition of the NCC Collaborator shares the current work of the NCC/ RC system in related needs assessment activities, along with educational efforts.  To view the issue, click here.