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 access to genetic healthcare across the Pacific Northwest. Expanded Patient Care and Community Impact This past year marked significant growth in our ability to 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 embrace disability as a core part of our identities and who are part of the larger Disability community advocating for disability rights and equality. Today, …
Who Defines “Health” and What Purpose Does Its Definition Serve? Read More »
Part 4: Snipping Away “The Unfit” Read on for the final part of our series tracking the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a dystopian future. For early …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
Part 3: Stitching the Values of Our Future Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a dystopian future. As …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
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 threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward a …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
Part 1: The Threads of 20th Century Eugenics Interwoven with Modern Pronatalism Follow this upcoming series of blog posts to track the rise of the pronatalism movement in Silicon Valley, the threads of eugenics woven into the fabric of that movement, and the snags of humanity that may yet unravel a carefully stitched path toward …
The Rebirth of Eugenics: Tech Bros and Pronatalism Read More »
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 by BioMarin for the purpose of increasing linear growth in children with achondroplasia with open growth plates (individuals who are actively growing). Achondroplasia is the …
Pharma’s Role in Practice Guideline Development: Achondroplasia as a Case Study Read More »
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 also the mother of a young man with Down syndrome and has worked in disability advocacy for nearly 25 years. The past two weeks have …
Join Patients in the Fight to Save Medicaid and Social Services Read More »
Part 1: We work hard for the money (and by money, I mean $29.61) By Katie Stoll, MS, CGC In this series, we will review challenges with reimbursement for genetic counseling services. The current system undervalues genetic counseling, leading to a strain on clinics and hospitals, overutilization of genetic tests, burnout for genetic counselors, and …
Financial Challenges in the Fight for Independent Genetic Counseling Services Read More »
As a rare disease genetic counselor – who both has a rare genetic condition and serves rare disease patient populations as a provider – I have a Rare Disease Day Public Service Announcement for you: Do not order Direct-to-Consumer testing.
