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Advocacy

A drawing of a clock with a small area shaded in green representing reimbursed time and the rest of the clock shaded red indicating time not reimbursed.

Financial Challenges in the Fight for Independent Genetic Counseling Services

April 11, 2024
Advocacy Genetic Counseling
Image description: cartoon of an individual with a large mustache, a top hat, and cape standing behind a brown and red booth holding test tubes in front of a crowd of stick fingers. The booth has a banner reading "DTC snake oil" at the top and signs that read "Tests 100% of the DNA!", "Test your infant for ALL health conditions!," and "Holiday sale today!" A white speech bubble reads "Step right up! We are the ONLY ones who can give you ALL the answers!"

Direct-to-Consumer is Direct-to-Chaos for Rare Disease Families

February 29, 2024
Advocacy Genetic Testing
A photo of a lightbulb

The Diagnosis Moment

October 31, 2023
Advocacy Genetic Counseling Genetic Testing Pregnancy
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Polygenic Embryo Screening: Genetic Counseling Perspectives and Commercial Incentives

September 29, 2023
Advocacy Assisted Reproductive Technology Genetic Counseling Genetic Testing
Sept 2023 Newsletter Alzheimer Disease (1)

Dementia, Drugs, and DNA

September 28, 2023
Advocacy Genetic Counseling Genetic Testing
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Mitochondrial Disease in the News; the darker reality of living with a rare disease

September 28, 2023
Advocacy Genetic Testing
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Advocacy

Financial Challenges in the Fight for Independent Genetic Counseling Services

Advocacy, Genetic Counseling / By

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 …

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Polygenic Embryo Screening: Genetic Counseling Perspectives and Commercial Incentives

Advocacy, Assisted Reproductive Technology, Genetic Counseling, Genetic Testing / By

By Katie Stoll The Polygenic Embryo ELSI Research “PEER Group”, an NHGRI-funded research consortium that aims to build an initial framework for the consideration of the ethical, legal, and social implications (ELSI) of Polygenic Embryo Screening (PES), recently hosted a conference titled, Ready or Not? The Science and Ethics of Polygenic Embryo Screening. I was …

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Mitochondrial Disease in the News; the darker reality of living with a rare disease

Advocacy, Genetic Testing / By

By Devin Shuman (she/her) Living life as a genetic counselor with mitochondrial disease may appear to mostly involve taking selfies with mitochondria jewelry and plushies from etsy. And while that might be a defining part of my rare disease lived experience, there are three current news stories that highlight the darker side of my rare …

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BRCA2 on the TODAY Show: Jill Martin’s Story

Advocacy, Cancer, Genetic Counseling, News / By

Photo credit Jill Martin Instagram A couple weeks ago, I received a message in a group text chat with friends and patient advocates. Janet wrote, “Jill Martin is sharing our message of inheriting mutations from our fathers!” Her sister Eileen shared, “I just watched it. It really touches home.” Jill Martin, lifestyle contributor of the …

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Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series

Advocacy, Genetic Counseling / By

By Devin Shuman, MS, CGC and Jenny Rietzler, MS, CGC Okay, so we now are all well aware that there is endless perpetuation of LGBTQIA+ Discrimination in the ASRM recommendations. Time for another hard truth – the guidelines also discriminate against people who have disabilities, genetic conditions, and/or are neurodiverse. When we hear the term …

Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: A Series Read More »

LGBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: Series 2: Nod towards Cisgender, Heterosexual couples

Advocacy, Genetic Testing / By

By Devin Shuman, MS, CGC and Jenny Rietzler, MS, CGC Hopefully after reading part one of our new series, LQBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation, you’ve reviewed the ASRM recommendations and realized that their failure at inclusivity extends far beyond their discriminatory practices …

LGBTQIA+ Discrimination and Eugenics in the American Society for Reproductive Medicine (ASRM) Guidelines for Gamete and Embryo Donation: Series 2: Nod towards Cisgender, Heterosexual couples Read More »

Cobie Whitten: A Tireless Advocate for Supporting Cancer Patients Brings Her Passion for Understanding the Psycho-Emotional Impacts of Health to GSF

Advocacy, Cancer, Genetic Counseling / By

We are pleased to highlight board member, Dr. Cobie Whitten, who brings her experience and passion as a patient advocate to the Genetic Support Foundation.  For more than 30 years, Cobie Whitten has worked tirelessly to support patients facing a cancer diagnosis and improve survivorship services for those patients and their families at all points …

Cobie Whitten: A Tireless Advocate for Supporting Cancer Patients Brings Her Passion for Understanding the Psycho-Emotional Impacts of Health to GSF Read More »

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