Get Involved
Stay Connected with Beyond Primrose
Receive updates on ZBTB20 research, family resources, events, and ways to support our community.
By sharing your time and talents, you help raise awareness and fund critical research for Primrose Syndrome.
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.
Every gift helps advance life-changing research and brings us closer to a better future for those with Primrose Syndrome.
FOR FAMILIES
Connect, share, and find support in our private Facebook group for families affected by Primrose Syndrome.
Join us the last Thursday of each month for our Family Community Meetings! To accommodate different schedules and time zones, we offer two meeting times (1:00 PM and 9:00 PM EST)
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.
Join our confidential Primrose contact registry Every registration helps us better understand and represent our and connect with the Primrose Community
We’d love to hear
from you!
Connect with us to share ideas for our website; feature your child and family’s story on our website, newsletters, and rare disease month campaign; suggest providers that may be interested in joining our scientific advisory board; or explore other ways to get involved with Beyond Primrose.