Feb 19 2020

Research for families of children with hearing loss

Published by under Family Advocate

Researchers at Utah State University are recruiting families of children recently diagnosed with hearing loss for a study that may help them gain confidence in managing hearing aid use and incorporate hearing aid care habits into their daily lives. They are recruiting parents of children birth to 42 months of age that have traditional behind-the-ear hearing aids. The study is exploring the benefits of a six-week eHealth intervention that provides parents with supportive accountability. Contact Dr. Karen Muñoz  for more information.

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Feb 19 2020

Sickle Cell Disease Training and Mentoring Program (STAMP)

Published by under Education

The U.S. Department of Health and Human Services (HHS) Office of Minority Health (OMH) has announced a new pilot program to train primary care providers on the basics of sickle cell disease. The Sickle Cell Disease (SCD) Training and Mentoring Program (STAMP) is a collaboration between OMH, the Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau, and the HRSA Bureau of Primary Health Care. STAMP is designed to equip providers with the appropriate knowledge, skills, and co-management support to care for low-complexity patients living with sickle cell disease. The program consists of free web-based trainings that will be offered from January – June 2020. Visit OMH’s sickle cell disease website to learn more about the program, register and see a calendar of upcoming trainings. Learn More.

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Feb 19 2020

Subscribe to the LIFT Newsletter

Published by under Education

Once a quarter NCC publishes the LIFT newsletter to provide an overview of the current genetic service delivery system. In addition to the quarterly memo, LIFT alerts are published when there is breaking policy news.  The recent LIFT newsletter included updates on the following legislation:

    • Newborn Screening Saves Lives Reauthorization Act
    • Medical Nutrition Equity Act
    • Access to Genetic Counselor Services Act
    • Genetic Information Privacy Act
    • Protecting Personal Health Data Act

Click here to see past newsletters and subscribe:  http://bit.ly/nccrgcLIFT

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Feb 19 2020

Bridging the Gap Medical Interpreter Training

Published by under Education

The Bridging the Gap Medical Interpreter Training prepares individuals to become successful medical interpreters. This language-neutral course, taught in English, is open to speakers of all languages. Prior experience in the medical and/or interpreting fields is helpful but not required! Students will learn the necessary skills to become a qualified medical interpreter by participating in group activities, gaining practice interpreting from day-one onward, and through the instruction and insight of our experienced trainers.   Multiple dates are available in 2020.

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Feb 19 2020

FDA Authorizes First Test to Aid in Newborn Screening for Duchenne Muscular Dystrophy

Published by under Announcements

Earlier this month, the U.S. Food and Drug Administration authorized the marketing of the first test to aid in newborn screening for Duchenne muscular dystrophy, a rare genetic disorder characterized by progressive muscle loss. To read more, click here

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Jan 16 2020

Public Health Informatics Newborn Screening Position Description Toolkit

Published by under Announcements

The APHL NBS Health Information Technology (HIT) Workgroup identified the need for NBS programs to be able to successfully recruit qualified public health informatics candidates. The workgroup developed four editable, examples of position descriptions within this toolkit. Visit NewSTEPs.org for more HIT-related resources

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Jan 16 2020

Call for Abstracts – 2020 Newborn Screening Symposium

Published by under Announcements

Newborn Screening Symposium (NBS2020) will be held in Des Moines, IA from October 18–22, 2020. They are looking for abstract, oral presentations and posters/roundtables submissions, which may be completed online via the abstract submission site. Full details on this process are contained in the Call for Abstracts. The deadline for abstract submission is February 28, 2020. 

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Jan 16 2020

New Severe Combined Immunodeficiency (SCID) resource for families

Published by under Announcements

The Immune Deficiency Foundation launched their new website, SCID Compass, to support parents of babies with severe combined immunodeficiency. SCID is newborn screening condition in which the body is not able to fight off serious and life-threatening infections. The website provides detailed information about SCID, including an in-depth explanation of SCID, treatment options, and advice on how to care for a child with SCID. It also shares family stories and information on support services. 

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Jan 16 2020

Save the Date! 2020 National Newborn Screening Meetings

Published by under General

  • National Meeting on Spinal Muscular Atrophy (SMA) and X-linked Adrenoleukodystrophy (x-ALD) Newborn Screening | April 15–16, Washington, DC
     
  • Short Term Follow-Up National Meeting | May 12–13, Seattle, Washington
     
  • Continuous Quality Improvement National Meeting | June 24–26, Washington, DC
  • Newborn Screening & Genetic Testing Symposium | October 18–22, Des Moines, Iowa

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Jan 16 2020

Upcoming Educational Webinars

Published by under Education

  • January 23, 1:00 pm ET – Rural Health Research Gateway:Rural Disparities in Health and Healthcare by Race and Ethnicity. This webinar will address differences in county-level premature death, individual-level differences in health status and differences in healthcare access and use by county racial and ethnic composition. Register.
  • January 27, 10:00 am ET – Center for Disease Control – Ethical, Legal, and Social Implications of Human Genomics Research: Past, Present and Future. https://www.cdc.gov/genomics/events/ELSI_2020.htm

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