Families
Connect with the Community
Primrose Syndrome Contact Registry
Family Community Meetings
Connect, share, and find support in our private Facebook group for families affected by Primrose Syndrome.
Connect with other Primrose families, hear foundation and research updates, ask questions, and share experiences. Meetings take place the last Thursday of the month, with sessions at 9:00 AM and 9:00 PM EST—check the upcoming schedule for details.
Beyond Primrose Research & Support Network
Join the Contact Registry to help us connect with your family and better represent the Primrose syndrome community. This is separate from enrollment in the Natural History Study.
Parent/Caregiver Facebook Group
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.
Participate in Research
Primrose Syndrome Natural History Study
Help researchers better understand how Primrose Syndrome affects individuals across the lifespan. Every participant contributes valuable information that can improve understanding, inform future care, identify meaningful outcomes, and prepare our community for future research.
Keep in Touch
Stay Connected
We’d love to hear
from you!
Have an idea, resource, family story, question, or suggestion for Beyond Primrose? We want families to help shape the community we're building. Reach out and let us know what's important to you.
Receive updates from Beyond Primrose on ZBTB20 research, family resources, events, and ways to support our community.