Archive for the 'General' Category

Mar 28 2018

ACHDNC Recommends Adding SMA to the RUSP

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At its quarterly meeting in February, the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended that newborn screening for Spinal Muscular Atrophy (SMA) be added to the Recommended Uniform Screening Panel (RUSP).  The recommendation now goes to Health and Human Services Secretary, Alex Azar, for final approval.  The next ACHDNC meeting will be held in-person on May 10-11.

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Mar 28 2018

WSRGN Family Advocates Presentation a Great Success at AMCHP!

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WSRGN Family advocates and staff, Tamara Bakewell, Angela Lindig, Jill McCormick, and Sylvia Mann presented on “Family Advocacy – Genetic Networks” at the Association of Maternal & Child Health Programs Annual Conference in February.  We had a full house for this important topic, with over eighty people in attendance.  AMCHP will be sharing the recording, and it will be made available for all WSRGN partners.

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Mar 28 2018

NHGRI 15 for 15 Celebration

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April 2018 will mark the 15th anniversary of the completion of the Human Genome Project. To commemorate this milestone and the genomic advances that have been made since 2003, the National Human Genome Research Institute (NHGRI) will launch the ’15 for 15′ Celebration – unveiling 15 ways that genomics has and will continue to transform our world.

The WSRGN will be linking to the activities for the 15 for 15 Celebration on our website and Facebook page.  Starting April 5th, we will reveal a new advance each day leading up to DNA Day on April 25th, so stay tuned for more!

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Aug 10 2017

Association of Maternal and Child Health Programs (AMCHP)

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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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May 05 2017

Check out the latest NCC Collaborator Newsletter

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Check out the latest NCC Collaborator Newsletter, for the final monthly newsletter of the 2012-2017 award period.

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May 05 2017

Family and Baby Expos in Seattle and Sacramento

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To continue to better understand parents’ attitudes towards newborn screening for later onset disorders, education needs, and preferred contact methods, the Hawaii Genomics Section designed and distributed a short survey at the Seattle Family Expo on March 18 and 19, and the Sacramento Kids Expo on April 9 and 10. New and expectant parents coming to our booth were very interested in newborn screening, and we collected hundreds of completed surveys.

Huge and sincere thanks to the Washington and California State Departments of Health for all their time and invaluable help!

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Jun 06 2016

New Prenatal Genetic Testing Video Series from Washington State Department of Health (DOH) and Genetic Support Foundation Now Available Online

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Today, pregnant women are faced with deciding among an increasingly complex variety of prenatal genetic tests. It’s essential that they have access to resources that can educate them about these tests. Washington State law (RCW 70.54.220) and professional societies’ guidelines recommend that all pregnant women be offered options for prenatal screening and diagnosis. Women’s decisions about these testing options should be informed and consistent with their needs and values. The Screening and Genetics program collaborated with the Genetic Support Foundation (GSF), to produce a series of seven videos regarding prenatal genetic testing options.  The videos are available now on DOH’s YouTube Channel and are ready to be shared with patients. Here they can select among the series that includes:

1) How to Decide About Prenatal Genetic Testing
2) Conditions Commonly Tested for During Pregnancy
3) Prenatal Cell Free DNA Screening
4) Traditional Maternal Serum Screening
5) Prenatal Ultrasound
6) Chorionic Villus Sampling
7) Amniocentesis

These are also posted on our website to download. We hope that both patients and providers will find them useful. Expectant parents can watch at home and health care providers can download them to show patients during office visits. The storyboard development involved extensive audience testing with the intended audience of women of reproductive age as well as healthcare professionals, parents of children with genetic conditions, and leaders from advocacy groups.  Please take a moment to view the videos and consider sharing with colleagues, family and friends.

Feel free to share any comments you have at Genetics@doh.wa.gov

 

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Jun 06 2016

Region 4 Midwest Genetics Collaborative presents “Receiving a Diagnosis: The Journey from Hope to Cope” Family video

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“Receiving a Diagnosis: The Journey from Cope to Hope” family video is now available from Region 4. Having a child diagnosed with a genetic condition is an emotional journey for parents. Coping with the diagnosis is an ongoing process. There is no right or wrong way to feel. The Region 4 Midwest Genetics Collaborative brought together some families to share their experience in this video.

To view this video, please follow this link.

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Jun 06 2016

NCC Care Coordination Exemplary Practices Report

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Coordinating Care for Children with Genetic Disorders: Sharing Exemplary Practices from Primary Care and Specialty Care Providers  report is now available! Please share the report (linked above) with your networks. The report is hosted on the NCC Care Coordination Workgroup Products page (here). On the landing page is the report itself as well as the abstract. If you have specific criteria to share the report with your network, please contact Megan Lyon.

Twenty-four programs were nominated for providing exemplary care in coordinating services for children with heritable disorders. Individuals representing the programs participated in qualitative telephone interviews. The nominees represented a variety of primary care and specialty practices and community-centered programs. Key themes and strategies emerged from the interviews, several of which crossed settings – details are offered herein. Providing coordinated care is rewarding for the clinic staff and deemed valuable by patients and families, but it is time-consuming and not adequately reimbursed by third-party payers. Developing and maintaining committed staff and financial support are ongoing challenges for the programs interviewed.

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Feb 18 2014

NCC Collaborator-February Edition

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The February edition of the NCC Collaborator is available! This issue focuses on regional projects be modified for, disseminated to, and replicated by other regional collaboratives. To view the February edition of the NCC Collaborator, click here.

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