Get Involved
Connect, share, and find support in our private Facebook group for families affected by Primrose Syndrome.
Don’t miss our monthy Primrose family zoom calls!
By sharing your time and talents, you help raise awareness and fund critical research for Primrose Syndrome.
Fill out our volunteer interest form or email us!
Join our confidential Primrose contact registry to receive updates about research, resources, and opportunities—while keeping your information private and secure.
Every gift helps advance life-changing research and brings us closer to a better future for those with Primrose Syndrome.
Save the Date!
Primrose Family Community Meetings (Virtual)
Thursday, May 28, 2026: 9:00 EST
Thursday, June 25, 2026: 1:00 EST
June 13, 2026
Philadelphia, PA
Join Team Beyond Primrose for an inspiring and family-friendly day at the Million Dollar Bike Ride in Philadelphia. Whether you are riding, walking, volunteering, or cheering from the sidelines, you can expect a fun and meaningful event filled with energy, community, and purpose.
The day includes multiple ride distances, a one-mile walk, rare disease team gathering spaces, food, music, games, and post-event festivities for all ages. Most importantly, it is a chance to come together, raise awareness for Primrose Syndrome, and show our children and families that they are supported by a strong and growing community.
The day includes multiple ride distances, a one-mile walk, rare disease team gathering spaces, food, music, games, and post-event festivities for all ages.
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.