What we’re about
Genetic counseling education has traditionally focused on the medical aspects of disability—but patients and families live far beyond the diagnosis.
This project exists to help bridge that gap.
Through real stories, community perspectives, and practical tools, we aim to:
Center lived experience alongside clinical knowledge
Build confidence in navigating the social, emotional, and relational dimensions of disability
Challenge assumptions and reduce bias in clinical care
Support genetic counselors in delivering equitable, respectful, and person-centered care
At its core, this work is about reimagining how we learn, teach, and practice genetic counseling—by recognizing that the people we serve are not defined by a diagnosis, but by their full, complex lives.
Who we are
We are a collaborative group of genetic counselors, trainees, and individuals with lived disability experience working to advance more inclusive, person-centered care in genetics.
This project was created by Lucy Holland, a genetic counseling graduate student at the University of Kansas Medical Center, as part of her master’s thesis. The curriculum was developed in close partnership with a Community Advisory Board made up of individuals with disabilities and genetic counselors, whose lived experiences and insights are central to this work.
Guided by mentorship from Chelsea Wagner, MS, CGC, and supported by leaders across the field, this project reflects a shared commitment to elevating lived experience as an essential form of expertise in genetic counseling.
This work was partially funded by the National Society of Genetic Counselors
Contact us
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