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Our
Projects

At Rare Genetics Consulting, we partner with organizations, institutions, and professionals to bring expert-level insight and execution to complex initiatives spanning rare disease, human genetics, diagnostics, research strategy, and precision health. Here are a few select examples of the work we've supported and the kinds of projects we're passionate about.

The Rare Advocacy Movement: HEDI

Rare Genetics Consulting is a key collaborator on the Health Equity Diagnostic Infrastructure (HEDI) initiative, led by The Rare Advocacy Movement. ​

This initiative is focused on creating equitable, patient-centered healthcare framework for those  living with life-altering or life-threatening rare conditions. Rare Genetics Consulting contributes to the development of this infrastructure, designing systems that enable timely, accurate, and accessible diagnostic and clinical services. 

This collaborative effort advances both health equity and research innovation, aiming to reshape global diagnostic landscapes without compromising patient rights or autonomy.

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Mental Health for Rare: The Rare Therapist Program

Rare Genetics Consulting is a key collaborator on the Rare Therapists Program, an initiative led by Mental Health for Rare.

This initiative is dedicated to training mental health professionals to provide specialized support for individuals with rare diseases. Rare Genetics Consulting was brought on as a key collaborator to create disease-specific continuing education modules. 

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Research

The founder, Brittany Jež, maintains an active commitment to advancing the understanding of complex genetic conditions, with a particular focus on Ehlers Danlos Syndrome. Her research explores the intersection of clinical presentation and physician education, aiming to improve both rare disease recognition and patient outcomes.

In addition to ongoing independent projects, Brittany serves as a graduate-level thesis advisor, supporting the next generation of researchers in developing meaningful, impactful work, in the field of human genetics.

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From Vision to Impact

Learn more about how founder Brittany Jez is helping shape solutions at the intersection of research, advocacy, and rare disease diagnostics in this in-depth interview:

Championing Change: Brittany Galante on Bridging Gaps in Rare Disease Healthcare

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