Dwarfism and Your Family: A Conversation Guide
Contributing authors: Andrea Schelhaas, Cruzanne Macalligan, and Colleen Gioffreda When you learn your child has dwarfism, it’s natural to have many questions. That curiosity is a great thing – it’s …
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HRSA Grant Progress Update – Year 2 Highlights
We’re excited to share the remarkable progress made during year two of our multi-year HRSA Healthy Tomorrows Partnership for Children Program (HTPCP) grant, which funds our continued efforts to expand …
Who Defines “Health” and What Purpose Does Its Definition Serve?
By Devin Shuman, CGC (she/her) and Andrea Schelhaas, CGC (she/her) *Of note, we purposefully use capital D in Disabled and capital A in Autistic in this text as individuals who …
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The Rebirth of Eugenics: Tech Bros and Pronatalism
Part 2: Weaving Together Unlikely Allies in Defense of Good Parenting Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the …
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Part 1: The Threads of 20th Century Eugenics Interwoven with Modern Pronatalism
The Rebirth of Eugenics: Tech Bros and PronatalismFollow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven …
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Pharma’s Role in Practice Guideline Development: Achondroplasia as a Case Study
By Andrea Schelhaas, Stephanie Meredith and Katie Stoll In November 2021 under the Accelerated Approval Program, the U.S. Food and Drug Administration announced approval of Voxzogo (vosoritide), a drug developed …
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Genetic Exceptionalism: Medicine’s Overreliance on Genetic Testing
By Devin Shuman, CGC (she/her) We need to talk about genetic exceptionalism. By this I mean, the notion that genetic testing is so groundbreaking that it has replaced the entire …
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Join Patients in the Fight to Save Medicaid and Social Services
This article is written by Dr. Stephanie Meredith, the Development Director at Genetic Support Foundation and the Supervisor of our Lettercase National Center for Prenatal and Postnatal Resources. She is …
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CHEK2-Associated Cancer Risk and Screening Recommendation Updates
Until last week, National Comprehensive Cancer Network (NCCN) guidelines reported that CHEK2 pathogenic variants (or risk-increasing genetic differences) are associated with an increased risk of colon cancer, citing a 5%-10% …
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PLUGS Summit 2024
PLUGS (Patient-centered Laboratory Utilization Guidance Services) is a non-profit laboratorystewardship organization founded in 2013 with >100 members representing hospitals, healthsystems, diagnostic companies, patient advocacy groups and payers. Seattle Children’s …