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:

Comments Off on Redesigned National Consortium of Telehealth Resource Centers Website

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.

Comments Off on Behind the Mystery: Rare and Genetic

Feb 23 2021

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

Published by under Resources

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

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.

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

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

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

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.

Comments Off on Apply to Participate in the 2021 NORD Summit

Feb 23 2021

Download the OMH Black History Month Infographic

Published by under Education

  • As part of Black History Month, the HHS Office of Minority Health (OMH) has created a new infographic that presents information on heart disease, COVID-19 and the effects of social determinants of health on the African American community.
  • Visit the OMH website to download this infographic as well as the Black History Month social media toolkit.

Comments Off on Download the OMH Black History Month Infographic

Feb 23 2021

Newborn Screening Program Overview Data Visualization Available

Published by under Education

Did you know that NewSTEPs has a new data visualization available to authorized users on the NewSTEPs website? The NBS program overview dashboard provides a summary of various data elements submitted to the NewSTEPs data repository, including state profile, quality indicator and case data elements.

Comments Off on Newborn Screening Program Overview Data Visualization Available

Feb 23 2021

Raising Diverse Leaders: Identifying need and answering the call in the underserved population

Published by under Education

Hands & Voices has recently developed a presentation as part of their Diversity and Inclusion planning/activities within the EDHI system. Please go to their website for the full presentation.

Comments Off on Raising Diverse Leaders: Identifying need and answering the call in the underserved population

Feb 23 2021

Genomics Education Workgroup current projects

Published by under Announcements,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 addition to the small groups, the workgroup will be holding a series of monthly discussions during the calls about social determinants of health, and how the RGNs should consider them when developing educational resources and doing outreach to communities. If you are interested in participating in any of these small groups or know someone who has expertise in social determinants of health and developing educational materials/outreach, please contact lila@hawaiigenetics.org.

Comments Off on Genomics Education Workgroup current projects

« Prev - Next »