Please join the National Academies of Sciences, Engineering, and Medicine as they convene a
2-day national summit on Addressing Diversity, Equity and Inclusion in 21st Century STEMM Organizations.

The summit will highlight how racism operates at different levels in science, technology, engineering, math, and medicine (STEMM) settings.

Register here: https://www.eventbrite.com/e/addressing-diversity-equity-inclusion-anti-racism-in-21st-century-stemm-tickets-154452267891

The NSGC Annual Conference showcases advancements across the breadth of the genetic counseling profession to provide education and build community. Attendees will gain knowledge of clinical and scientific best practices and insights into emerging research. The conference provides a unique opportunity to engage and network with colleagues and pursue professional development.

In order to provide you with the greatest flexibility, NSGC is excited to offer two different attendance options for the 40th Annual Conference – in-person in New Orleans or online through the NSGC Virtual Experience:

Register here: https://my.nsgc.org/event-registration

The first-ever Virtual Marfan Foundation Annual Conference will be held from July 8-11. This four-day event offers innovative ways to reconnect with old friends and make new ones through condition discussions, social events, and open virtual spaces to hang-out and share.

The medical sessions on Marfan, Loeys-Dietz, VEDS, and Stickler syndrome will feature leading experts in the field and will allow for robust question and answer exchanges.

There is no cost to register: https://www.tfaforms.com/4904021

The CDC recently commented on its recommendations for public health genomics for the next decade. Read the post here: https://blogs.cdc.gov/genomics/2021/06/09/what-should-be/

APHL’s Hemoglobinopathy Workgroup is excited to host an upcoming webinar on June 30th from 2-3:30 pm ET. This webinar will provide an overview of identifying newborns who have been transfused and how to optimize newborn screening. It will discuss: Types of transfusions and how they can interfere with newborn screening results, protocols and case examples from four NBS programs for trying to uncover transfused babies on the hemoglobin screen, case examples and education materials from the follow-up perspective on transfusion.

• Register online at https://aphl.zoom.us/meeting/register/tJwlcOyvpjMpE9ZLWsVjnI_Hr4rVgSTfPJ0U

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.