Logo for RORA Compass featuring a blue and yellow compass design with DNA helix at the center and the words "RORA COMPASS" below.

Founded by parents, driven by science, and fueled by compassion.

We’re navigating RORA together

A rare diagnosis can feel overwhelming — and no family should have to face it alone.

Welcome to RORA Compass, a community connecting families, researchers, and advocates working to better understand RORA gene variant related disorders.

Together, we’re creating a future where every RORA diagnosis comes with clarity, connection, and care.

Our Three Goals

  • Accelerate research and therapeutic innovations

    We invest in research to uncover potential therapies for individuals living with RORA gene variants.

    Our first step: raising $100,000 to support a critical preclinical research study.

    donate now
    A female scientist in a white lab coat looking through a microscope in a laboratory with various lab supplies on shelves behind her.

  • Better understand the impact of RORA variants

    We are working to determine the best way to responsibly aggregate patient data to support our research heroes and accelerate scientific discovery.

    This effort will be shaped in collaboration with both the research and patient communities.

    What We Know Today
    Person using a laptop with analytics and graph data on the screen, a smartphone and glasses on a white table, and a ceiling vent in the background.

  • Connect RORA families and individuals worldwide

    Living with a rare disorder can feel isolating. We bring families together to share experiences, learn about the latest research, and support one another along the RORA journey.

    For Families & Caregivers
    A woman smiling and walking with two young boys on a paved path in a park surrounded by green trees and foliage during daytime.

Hear from Our Families

Real families. Real stories. Real connection.
Visit our Instagram to hear Natalie and Jenn share their journeys—and how the RORA community helped their families find connection and support after diagnosis.

Today is Rare Disease Day 2026. RORA-related variants affect development in different ways. Research shows individuals may experience: • Later developmental milestones • Learning and social differences • Epilepsy (about 50%) • B
This is real. And it’s happening now. RORA research has moved from unknown to understood — with scientists actively uncovering how this gene affects the brain and how we can intervene. Donations today help fuel discoveries, therapies, a
Check out this adorable throwback from 2016! Our little one is turning 10 this year and has made incredible progress at their own pace. RORA variant kiddos like ours often need a team of therapists and support systems - from OT to PT, speech therapy,
“Thank you very much—and check out our updates.” —E 💛 Over 40 founding donors. 14% of our $100,000 goal. Under 3 weeks. We’re incredibly grateful to everyone who has believed in this mission from the start. Will you
Our three guiding goals! RORA Compass will support research from early discovery to meaningful treatments for individuals affected by RORA gene variant related neurodevelopment disorders. We unite families, clinicians, researchers, and advocates to a
Founding Donor Thank You Cards En Route - only half the stack!!! Join us —>> roracompass.org
Welcome to a new community of action in support of individuals living with RORA gene variant related disorders. Together, we can accelerate research and connect families. Let’s create a future where every RORA genetic diagnosis comes with clar

Follow us on social

Follow us on social for research and social updates.

Facebook group is for RORA families only.