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Advancing Research. Uniting Families. Changing Futures.

Building research, resources, and hope that Primrose Syndrome families have never had.

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Our Mission

Beyond Primrose ZBTB20 Foundation exists to accelerate research, expand knowledge, and improve the lives of those affected by Primrose Syndrome. Through scientific collaboration, education, and advocacy, we advance understanding and therapeutic development — creating a future where every child can soar beyond Primrose.

Whether you're newly diagnosed or long into your Primrose journey, complete this form to receive updates on research, studies, and treatment advancements.

Join Our Registry
Learn more
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Primrose Syndrome is a rare genetic condition caused by a change to the gene ZBTB20. It can cause differences in hearing, muscle tone, learning, vision, and metabolism, with symptoms ranging from mild to more complex and changing over time.

Our Research
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Your support fuels research that brings families answers and hope. Guided by our Scientific Advisory Board, donations are carefully invested in studies that deepen understanding of the ZBTB20 gene and move us closer to future treatments for Primrose Syndrome.

Get Involved
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Be part of the movement changing the future of Primrose Syndrome. Whether you’re a family member, researcher, clinician, or supporter, your voice, time, and support help accelerate research, strengthen our community, and bring hope to families impacted by Primrose Syndrome.

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Our Partners

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