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

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.

• 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.

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.

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.

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.

• January 14, 2021: The role of mentoring in promoting DEI in STEM education and research
• January 21, 2021: How to be an effective mentor for Underrepresented STEM trainees.
  • Register in advance here

• The Association of Public Health Laboratories (APHL) NewSTEPs is pleased to announce the first webinar in the New Disorders Workgroup Winter Webinar Series on Thursday, January 21, 2021, from 2:00 – 3:30 pm ET. This three-part webinar series will provide updates from programs screening for disorders not currently on the RUSP, both as pilot programs and as components of universal screening. This series will end with a discussion of future disorders that have been nominated for review by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) and/or are in current pilots.
• Please use this link to register for the webinar.

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.

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