Apr 07 2021

Participate with the Genomics Education Workgroup

Published by under Education

  • The NCC Genetics and Genomics Education Workgroup continues to share educational resources created among the regions. Three small breakout working groups have been convened from this group to work on 1) CME Processes for educational offerings, 2) Healthcare interpreter trainings, and 3) Public Health Genetics Week, which will be held this year on May 24 – May 28, 2021. 
  • In March, the workgroup was honored to have Dr. Carla Easter and Ms. Christina Daulton of the National Human Genome Research Institute (NHGRI) share with us their experiences and expertise in outreach and partnership with diverse underrepresented communities. This discussion was part of the focus for this year on social determinants of health and how to consider them when developing educational resources and outreach to communities.
  • If you are interested in participating in any of these small groups going forward, please contact Lila.

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Apr 07 2021

HRSA Telehealth Learning Series

Published by under Education

The Health Resources and Services Administration (HRSA) invites you to a special webinar on Federal Broadband Programs and Resources. This webinar is part of HRSA’s Telehealth Learning Webinar Series. The series’ goal is to highlight successful projects/best practices as well as resources to promote and further the use of telehealth technologies for health care delivery, education, and health information services.

  • Date: Wednesday, April 21, 2021
  • Time: 12:00pm – 1:00pm CT | 1:00pm – 2:00pm ET
  • Register for the session here.
  • For more information about the series, contact Kim Shiu at KShiu@hrsa.gov.

For more resources and tools about telehealth, visit telehealth.hhs.gov and https://www.hrsa.gov/rural-health/telehealth

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Apr 07 2021

HRSA-21-079 Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions

Published by under Funding

The Health Resources and Services Administration (HRSA) is accepting applications for the fiscal year (FY) 2021 Long-term Follow-up for Severe Combined Immunodeficiency and Other Newborn Screening Conditions Program. The goal of this program is to ensure that newborns and children identified through newborn screening (NBS) achieve the best possible outcomes, by expanding the ability of state public health agencies to provide screening, counseling and services to these newborns and children. This NOFO supports this goal by making available funding to support comprehensive models of long-term follow-up (LTFU) that demonstrate collaborations between clinicians, public health agencies, and families.

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Apr 07 2021

HRSA-21-085 State Newborn Screening Interoperability Implementation Program

Published by under Funding

The Health Resources and Services Administration (HRSA) is accepting applications for the fiscal year (FY) 2021 State Newborn Screening Interoperability Implementation Program. The goal of the program is to support states in implementing activities towards achieving full data interoperability relating to newborns and children having or at risk for heritable disorders identified through newborn screening.

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Feb 23 2021

Redesigned National Consortium of Telehealth Resource Centers Website

Published by under Telehealth

The National Consortium of Telehealth Resource Centers has updated their website. The new site has improved resources to benefit practicing clinicians and patients alike, and includes an interactive map, collections of curated information, success stories, blurbs from experts, etc. Visit:

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Feb 23 2021

Behind the Mystery: Rare and Genetic

Published by under General

  • Rare Disease Day is almost here! Don’t Miss Behind the Mystery: Rare and Genetic, Airing on Lifetime’s The Balancing Act on February 24
  • Get ready to #ShowYourStripes and tune in to Lifetime on February 24 at 7:30am ET for a very special edition of Behind The Mystery! In partnership with the National Organization for Rare Disorders (NORD) and WEGO Health, Lifetime’s The Balancing Act will present a special Rare Disease Day segment of Behind the Mystery: Rare and Genetic, its recurring rare disease series.

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Feb 23 2021

(Reminder) HRSA’s New Newborn Screening Info Center Website

Published by under Resources

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Feb 23 2021

(Reminder) Spanish Translation of our acclaimed What to Expect from a Telehealth Visit: “Qué esperar de una visita de telesalud”

Published by under Resources

The WSRGN has created a Spanish translation of the What to Expect from a Telehealth Visit. This is the first of several translations to come in the new year.

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Feb 23 2021

(Reminder) Updated version of our acclaimed What to Expect from a Telehealth Visit video

Published by under Resources

The WSRGN has updated the “What to Expect from a Telehealth Visit” video with advice on seeking out a translator. Please feel free to share this version

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Feb 23 2021

Apply to Participate in the 2021 NORD Summit

Published by under Education

The NORD Rare Diseases and Orphan Products Breakthrough Summit happening on October 18-19, 2021 is the most impactful multi-stakeholder gathering of the rare disease community in the country. Each year, more than 900 participants gather to share the latest updates on rare disease diagnosis, genetics and genomics, drug development, patient engagement, rare disease research, FDA oversight and market accessibility of orphan products.

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