• https://www.nichq.org/news-item/explore-hrsas-new-newborn-screening-information-center
• https://newbornscreening.hrsa.gov/

NORD is excited to announce that registration for the 2021 Living Rare, Living Stronger® NORD Patient and Family Forum is now open. The event is an interactive virtual forum designed to bring the rare disease community and supporters together for two days of learning, sharing and bonding on June 26-27.  Registration to the Living Rare Forum includes a ticket to the Rare Impact Awards®, which will be streamed on June 28. The 2021 award honorees are an inspiring group of rare heroes making strides for our community.  Register here: https://rarediseases.org/living-rare-forum/

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.

Learn and Explore the National Survey of Children’s Health (NSCH) through the Data Resource Center for Child and Adolescent Health (DRC), a project of the Child and Adolescent Health Measurement Initiative (CAHMI)

The DRC includes numerous resources to learn about the details of the NSCH, including:

• Fast Facts,
• Guides to Topics and Questions by survey year,
• Guides to survey changes across years,
• Detailed content maps of survey findings in the DRC’s interactive data query.

See the MCHB website for more information on the NSCH administration, methodology, survey content, and data availability as well as MCHB’s CSHCN Data Brief using NSCH Data. There are also numerous archived resources for the NSCH and NS-CSHCN on the DRC.

With these features and resources, the DRC hopes to provide a service to the public by making available these data and findings for the betterment of children, youth and families in the United States. If you have any questions, please see the DRC FAQ, or contact us at info@cahmi.org. If you contact us and you are a Title V leader, please be sure to include this information. Thank you.

Precision public health is a new field of inquiry that applies genomics and other big data tools and technologies to the investigation and control of health threats in communities. A precision public health approach to COVID-19 requires rapid and iterative collection, analysis, and visualization of genomic, epidemiologic, geospatial, and contact tracing data. In most cases, these data include personally identifiable information (PII). For more information, or to register, go to: https://www.cdc.gov/genomics/events/microbetrace.htm

APHL invites you to submit abstracts for oral presentations, posters, roundtables and concurrent panel sessions. All submissions must be completed online via the abstract submission website (only abstracts submitted online will be considered). Please review the Call for Abstracts for full details on this process. The deadline for abstract submission is April 19, 2021. For more information, please consult the Symposium website.

• 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.

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 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.

• The NOFO can be accessed at: https://www.grants.gov/web/grants/view-opportunity.html?oppId=331850
• For more information, contact Mabatemije Otubu

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.

• The NOFO can be accessed at: https://www.grants.gov/web/grants/view-opportunity.html?oppId=331851
• For more information, contact Kim Morrison