Community & Research Roadmap
Community & Research Roadmap
Beyond Primrose ZBTB20 Foundation was founded by families with a shared belief: progress happens faster when lived experience, clinical expertise, and scientific discovery move forward together.
Our Community & Research Roadmap reflects both how far the Primrose Syndrome community has come and where we need to go next. We are building the knowledge, partnerships, and research infrastructure needed to better understand Primrose Syndrome, identify the questions and outcomes that matter most to individuals and families, and translate those priorities into meaningful research.
At every stage, individuals with Primrose Syndrome and their families help guide the path forward, working alongside clinicians, researchers, and community partners to improve understanding, strengthen care, and build toward future treatments.
Building a path from lived experience to better research, care, and outcomes
Individuals & Families at the Center
Patient and family partnership extends across every stage of our roadmap—from identifying unmet needs and meaningful outcomes to shaping research priorities, participating in studies, and sharing what we learn with the broader community.
Foundation & Community Building
ESTABLISHED
Family Community Meetings
Recurring opportunities for families to connect, share experiences, discuss priorities, and engage with invited clinicians and researchers.
Research & Support Network
An ongoing online community connecting individuals, families, healthcare professionals, and researchers.
Primrose Syndrome Contact Registry
Every registration helps us better understand, represent, and connect with the Primrose Community
Scientific Advisory Board
A multidisciplinary group bringing clinical and scientific expertise together with Beyond Primrose's family-led mission.
Family Education & Resources
Practical, accessible resources designed around needs identified within the community.
BUILDING FORWARD
Expand representation across the Primrose Syndrome community • Strengthen patient and family research leadership • Increase family–clinician–researcher collaboration • Develop structured approaches for identifying and prioritizing community needs • Continue building a collaborative Primrose Syndrome research network
WHY IT MATTERS
A connected and informed community creates the foundation for patient-centered research—helping ensure that future studies are informed by lived experience and focused on questions and outcomes that matter to people affected by Primrose Syndrome.