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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.

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.

Join the Contact registry

Whether your family is newly diagnosed or well into your Primrose journey, take less than five minutes to add your loved one to the Beyond Primrose Contact Registry and connect with the Primrose community. Every registration helps us better understand and represent our community as we advocate for research, resources, and support.

Join Beyond Primrose Research and Support Network

The Beyond Primrose Research and Support Network is a community platform where individuals and families can connect with friends, supporters, healthcare providers, and researchers—all in one place. Build relationships, share experiences and resources, and stay connected to opportunities that strengthen support, advocacy, and research.

Join the natural history study

Natural history studies show how a condition affects people throughout their lives. Because Primrose Syndrome is ultra-rare and affects everyone differently, each participant helps improve understanding, guide care, and prepare for future research.

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Our Partners

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