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.

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 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.