Family Community Meeting
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 (9:00 AM and 9:00 PM EST)
During the meetings, we will share:
Share Beyond Primrose Foundation updates and research updates
Celebrate our wins
Opportunities for families to connect, ask questions, and support one another
Join whichever session works best for your family. We hope to see you there!
Next Meeting: Thursday October 29, 2026 at 9:00 AM EST and 9:00 PM EST
NOVEMBER AND DECEMBER DATES ADJUSTED FOR THE HOLIDAYS
Future Dates:
Thursday November 19, 2026 at 9:00 AM EST and 9:00 PM EST
Thursday December 17, 2026 at 9:00 AM EST and 9:00 PM EST
Thursday January 28, 2027 at 9:00 AM EST and 9:00 PM EST
September Meeting Recap
Thank you to everyone who joined our September Family Community Meetings—and to Sarah and Isaac from COMBINEDBrain for helping families learn about the Primrose Syndrome Natural History Study!
Here’s what we shared:
💜 Connection & support: Our Beyond Primrose Research & Support Network brings families, supporters, healthcare professionals, and researchers together to share experiences, find resources, and stay informed.
🧬 Research progress: The Natural History Study collects information over time to help researchers better understand Primrose Syndrome, inform future care recommendations, and prepare for future research. Participation is voluntary, and every family’s experience matters.
🌱 What’s ahead: We’re building scientific collaborations, pursuing grants for research and family resources, and planning the 2027 Primrose Syndrome Innovation Summit.
Three ways to get involved:
🌼 Join the Research & Support Network
🌼 Learn about and join the Natural History Study
Your involvement helps us understand community needs, strengthen funding applications, and move research forward.