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 building a future full of potential

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 clarity, connection, and care.

Charting the course

RORA Compass supports research from early discovery to meaningful treatments for individuals affected by RORA gene variant related neurodevelopmental disorders.

We unite families, clinicians, researchers, and advocates to accelerate research, drive therapeutic innovation, and empower individuals living with a RORA related disorder. 

Learn What We Know About RORA
envision a day in the life of an affected child
Meet RORA COMPASS VOLUNTEER leaders
JOIN US IN THIS WORK AND DONATE NOW
SEE HOW WE CONVERT DONATIONS INTO IMPACT

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.

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.