Researchers & Clinicians
Partner With the Primrose Syndrome Community
Beyond Primrose ZBTB20 Foundation works to connect clinicians, researchers, healthcare professionals, and families to advance understanding of Primrose Syndrome and build a collaborative path toward better care and future research.
Whether you care for an individual with Primrose Syndrome, study ZBTB20 or related pathways, or have expertise that could help advance research, we welcome opportunities to connect and collaborate.
Connect & Collaborate
Beyond Primrose Research & Support Network
Healthcare professionals and researchers can join our online community to connect with individuals and families affected by Primrose Syndrome, engage with other professionals, and participate in discussions about care, research, and community priorities.
Explore Primrose Syndrome Research
Learn about the research initiatives currently underway and the infrastructure being built to better understand Primrose Syndrome and prepare for future studies.
Natural History Study
Beyond Primrose has partnered with COMBINEDBrain to launch a longitudinal Natural History Study for Primrose Syndrome. Clinicians and researchers can learn more about the study and help individuals and families understand opportunities to participate.
Scientific Collaboration
Our Scientific Advisory Board and research collaborators bring together expertise across clinical care, genetics, rare disease research, basic science, and therapeutic development. We welcome opportunities to expand this collaborative network as Primrose Syndrome research grows.
Interested in working together?
Advancing research in an ultra-rare condition requires collaboration. If your clinical, scientific, or research expertise may contribute to understanding Primrose Syndrome or improving care, we'd be glad to hear from you.