Close-up of yellow flowers in sunlight with a blurred background.

Care & Support

A color palette with five vertical color blocks in orange, purple, red, and teal.

Clinical Care &
Recommended Evaluations
for Primrose Syndrome

Because Primrose Syndrome affects multiple body systems, children and adults benefit from a coordinated, multidisciplinary care plan. Below is a summary of recommended evaluations after diagnosis and what may be monitored over time.

Treatment
& Support

There is no cure for Primrose Syndrome at this time, something we are working to change. Currently, the focus is on supporting development, managing medical symptoms, and preventing complications.

Learn more about specific Support Focuses below.

A young boy with short brown hair, smiling and winking, wearing an orange jacket, riding a bicycle in a grassy area with trees in the background.
Child sitting on the floor indoors, smiling, with blue and green padded mats and play equipment around him.

    • PT, OT, and speech therapy

    • AAC devices as needed

    • Behavioral therapy (ABA or behavior intervention)

    • Anti-seizure medications

    • Medications for ADHD, anxiety, mood, sleep

    • Diabetes treatment 

    • Thyroid & hormone treatments if indicated

    • Orthotics, braces, walkers, wheelchairs

    • Adaptive seating and communication devices

    • Mobility and sensory supports

    • IEP and school-based therapies

Today, monitoring and supportive care are the only options available for children with Primrose Syndrome.

Beyond Primrose ZBTB20 Foundation is working to change that by funding research focused on developing therapeutic options that address the both symptoms and the disease itself.

Learn About our Research