Archive for the 'Announcements' Category

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 Public Health Laboratories (APHL)

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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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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

Next ACHDNC Meeting to be held on May 11-12, 2017

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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/

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Jul 08 2016

NCC Collaborator- July 2016 Edition Now Available!

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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.

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Jun 06 2016

Mark your calendars for the 2016 Regional Summit in Seattle, WA from September 26-27

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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.

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Jun 06 2016

Regional Genetic Services Support Model Recommendation Brief – NOW AVAILABLE!

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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.

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Apr 07 2016

Registration is open for the Advisory Committee on Heritable Disorders in Newborns and Children meeting May 9-10, 2016

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The next meeting of the Advisory Committee on Heritable Disorders in Newborns and Children will be held on May 9 and 10th, 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.

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