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June 28, 2021 —
The MSRGN’s Genetic Ambassador group designed a survey for families which was shared in January 2021 and collected responses until March of 2021. This survey asked families (whose child went on to get a genetic diagnosis) about the “red flags” or symptoms, warning signs, or details that concerned them as parents. The responses of 114... Read More
April 21, 2021 —
MSRGN is inviting you to our inaugural Time 4 Genetics Webinar: Red Flags 4 Genetics May 18, 2021 (at 10am PT, 11am MT, noon CT, and 1pm ET) featuring Guest Presenters: Carrie Schmid, MD, FAAP a pediatrician and geneticist and Alexandra Grace, CPNP-PC a nurse practitioner, both from The Children’s Hospital of San Antonio Genetics Department.... Read More
April 6, 2021 —
The Federal Communications Commission (FCC) launched a new Emergency Broadband Benefit resource in April 2021. The tool allows partners and consumers to view by state or territory the providers that will be participating in the Emergency Broadband Benefit program. Each listing includes the type of service offered, whether it’s “fixed” or “mobile”, and whether the provider... Read More
March 30, 2021 —
HRSA(DSCSHN) would like to bring awareness to an existing data resource, which provides access to child- and family-level estimates from the National Survey of Children’s Health (NSCH). The Data Resource Center (DRC), which is a project of the Child and Adolescent Health Measurement Initiative (CAHMI) out of Johns Hopkins University, is funded by HRSA/MCHB under... Read More
February 17, 2021 —
In honor of Rare Disease Day, MSRGN and their Genetic Ambassadors are hosting 8 Genetic Pop-Ups across the 8 state region. There will be 3 pop-ups that are open for public registration hosted by Jamie, Emma and Hannah. Please pick the best time and date to fit your schedule, register, and join us! Jamie: 2/26/21... Read More
January 31, 2021 —
During our Virtual Winter Meeting, MSRGN announced the launch of its newest initiative: Genetic Navigator Program and subsequently the launch of the application for this program. The MSRGN Genetic Navigator Program is an initiative to help families navigate the genetic services system in their state of residence. In March of 2021, 8 genetic navigators will... Read More
January 25, 2021 —
Survey Title: MSRGN Red Flags Survey: For Families Who Should Take This Survey: individuals or families impacted by genetic conditions What is the survey about: The goal of the survey is to capture the experience of families and parents with the early signs and symptoms (Red Flags) their children may have experienced on their journey... Read More
January 25, 2021 —
This Telehealth 101 Virtual Workshop was hosted by the Health Resources and Services Administration (HRSA) Office of Regional Operations (ORO), in collaboration with the North Dakota Department of Health and Spirit Lake Tribe of North Dakota held November 18-19, 2020. The archive of the materials and recording of the presentations can be found linked below:... Read More
December 17, 2020 —
What a year 2020 has been! In an effort to spread some joy and cheer as we end the year, and maybe give you a little chuckle, please check out our GENETICS Themed gift guide for those special people in your life: DNA Artwork by ZuniArtist Children’s Book: I Love Genetics DNA Coffee Mug Fuzzy... Read More
December 16, 2020 —
MSRGN launched the 2021 Genetics Pop-Up application a few weeks ago! Are you wondering what a Genetic Pop-Up is? Read more about genetic pop-ups here. The application is now open for genetic ambassadors and individuals in our region to apply to host a virtual Genetic Pop-Up for Rare Disease Day in February of 2021. The deadline for the... Read More
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