Apr 07 2021

Family Advocates – Share your experience: Running a registry

Published by under Family Advocate

Many advocacy groups report being frequently contacted by other organizations to share their experience with operating registries. Help reduce this burden for you and for others by taking this survey from Genetic Alliance. Any advocacy organization who operates a registry is invited to reply. Genetic alliance will compile the answers and share the results with their network.

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Apr 07 2021

Vietnamese Translation of our acclaimed What to Expect from a Telehealth Visit animated video: “Những điều quý vị cần biết về cuộc khám bệnh qua Telehealth”

Published by under Telehealth

  • The WSRGN has created a Vietnamese transconversion of the What to Expect from a Telehealth Visit. You can find it at: https://youtu.be/MQeNKcT5l1g
  • More transconversions of the video are coming in Samoan, Mandarin, Cantonese, Korean, Tagalog, Ilocano, and Russsian.

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Apr 07 2021

WSRGN Announces Free On-Line Telehealth Training Course for Family Advocates

Published by under Telehealth

The Western States Regional Genetics Network (WSRGN) is excited to announce the launch of our free on-line telehealth training course for family advocate and other program staff to help families access services by telehealth and use them well.

The course gives a foundation of knowledge about telehealth and where to find telehealth resources to help families connect to services by telehealth. The seven modules are:

  • Introduction to Telehealth,
  • Overview of Telehealth Visits,
  • Telehealth Technology,
  • Best Practices for Telehealth Visits in a Patient’s Home,
  • Telehealth Policy and Legal Issue,
  • Coverage for Telehealth,
  • Family Resources for Telehealth

A course completion certificate is provided.  The estimated time to complete the seven modules is less than two hours.  To register and start the course, please go to: https://www.familytelehealthtraining.org/

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Apr 07 2021

New Health Program Manager Position at California Newborn Screening Program

Published by under Announcements

The California Department of Public Health (CDPH) has listed a new Health Program Manager I (HPM I) position to serve as the Chief of the NBS Follow-up Unit at the Genetic Disease Screening Program (GDSP). This position is located at the Richmond Campus in Contra Costa County in the San Francisco Bay area. CDPH is seeking qualified candidates to contribute to the Department’s important mission to advance the health and well-being of California’s diverse people and communities.

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Apr 07 2021

Reminder about HRSA’s New Newborn Screening Info Center Website

Published by under Resources

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Apr 07 2021

Registration Now Open – 2021 Living Rare Forum

Published by under Education

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/

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Apr 07 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.

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Apr 07 2021

Data Resource Center for Child and Adolescent Health

Published by under Education

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.

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Apr 07 2021

CDC Webinar: Precision Public Health in the Pandemic

Published by under General

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

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Apr 07 2021

Call for Abstracts: APHL 2021 Newborn Screening Virtual Symposium

Published by under Education

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.

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