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.
How we serve
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Fundraise to accelerate research and therapeutic innovations
We’re at a critical moment in time for gene therapy research, and we provide fundraising advocacy, monetary support, and patient access for our research heroes. Our first step - funding $100,000 in preclinical research to establish a RORA mouse colony with disease characteristics.
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Aggregate patient data to better understand RORA's impact
We are in the process of determining the best way to aggregate patient data in collaboration with potential partners. This decision will be informed by both the research and patient communities.
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Connect RORA families and individuals around the world
We host community forums to connect on the latest research initiatives, share our experiences with RORA caregiving and development, and unite around our common goals.
Follow us on social
Follow us on social for research and social updates.
Facebook group is for RORA families only.
