Our Story

In 2025, Beyond Primrose ZBTB20 Foundation was born when parents of newly diagnosed children with Primrose Syndrome were told there was “nothing that could be done”—and refused to accept that answer.

What began as a search for hope, awareness, and support quickly grew into a global, family-led effort determined to create meaningful change for individuals and families affected by Primrose Syndrome.

Beyond Primrose ZBTB20 Foundation was established in 2025 and currently operates under the fiscal sponsorship of Rare Village Foundation, a 501(c)(3) nonprofit organization. Through this relationship, Rare Village provides fiscal and administrative oversight while Beyond Primrose leads its mission, programs, community engagement, and research initiatives.

From the beginning, we knew meaningful progress would require both a strong community and a thoughtful research strategy. We established a secure Contact Registry, began regular Family Community Meetings, created educational resources, and formed a multidisciplinary Scientific Advisory Board to help identify knowledge gaps, evaluate research opportunities, and guide research priorities.

That foundation quickly began turning into action.

In 2026, Beyond Primrose partnered with COMBINEDBrain to launch the Primrose Syndrome Natural History Study, helping build the data needed to better understand the condition across the lifespan, identify meaningful outcomes, improve future care, and prepare for future research.

Alongside the Natural History Study, our growing research efforts include functional studies, patient-derived cellular research, biomarker exploration, and drug-repurposing collaborations, while we continue building the tools, partnerships, and infrastructure needed for future studies and potential treatments.

Throughout it all, individuals with Primrose Syndrome and their families remain at the center—helping identify unmet needs, shape priorities, participate in research, and define what meaningful progress looks like.

Built from love, determination, and the belief that every child deserves hope, Beyond Primrose exists to transform uncertainty into possibility. By bringing together lived experience, clinical expertise, and scientific discovery, we are working toward better understanding, better care, meaningful treatments, and a future where every child has the opportunity to soar beyond Primrose.