Genetic Counselors and Rare Disease Advocacy Organizations: A Perfect Marriage

4.29.2025

Recently, I reached my 14th anniversary at Parent Project Muscular Dystrophy (PPMD), a rare disease advocacy organization focused solely on Duchenne and Becker muscular dystrophy. I have been reflecting on how much has changed both personally and professionally during this time. Not only have my ...

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Celebrating Our NSGC Volunteers

4.21.2025

NSGC is proud to celebrate and acknowledge the hard work of our volunteers during National Volunteer Week. 

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AI/ML in Genomics and Genetic Counseling: Insights From NSGC's Genomic Technologies SIG AI/ML Subcommittee

4.15.2025

We are excited to introduce everyone to the AI/ML Subcommittee — a team of diverse genetic counselors with a wealth of expertise and united by a shared passion for advancing the intersection of artificial intelligence (AI), machine learning (ML) and genetic counseling. Our mission is to bridge the ...

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Advocate President’s Corner April 2025: Living in Uncertainty

4.4.2025

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Striking the Perfect Balance in Designing Hereditary Cancer Tests

4.2.2025

In the fast-moving world of genetic testing, designing and updating a hereditary cancer portfolio and each test it includes is a balancing act. It’s about making sure we include genes that matter clinically while steering clear of those with uncertain links to cancer. At Ambry, we’ve perfected ...

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2025 Journal of Genetic Counseling CEU Program

3.19.2025

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Many States, One Application: The Case for a National Licensure System

3.18.2025

New genetic counselors need licensure in the state where they practice and where their clients receive counseling. Licensure provides legal protection, standardizes requirements and is often required for insurance reimbursement. Multistate licensure is becoming more common, benefiting telehealth ...

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Advocate President’s Corner March 2025: Appreciation, Awareness, and Leadership Learnings

3.7.2025

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My Symbiotic Role as Patient Advocate at the Aicardi-Goutiere Syndrome Advocacy Group

3.4.2025

As an Advocate with the Aicardi-Goutiere Syndrome Advocacy Group (AGSAA), I have had the opportunity to work with an amazing group of parents and caregivers who are dedicated advocates working alongside clinicians, researchers and scientists to improve the lives of people and families living ...

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It's Time to Start Trusting Our Disabled Genetic Counselors

2.28.2025

For Rare Disease Awareness Day, two genetic counselors with rare genetic conditions have one request: Please stop asking genetic counselors with disabilities if we are comfortable counseling patients with our own diagnoses.

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