Rare We Share
When conditions are rare,
connection is everything.
For too long, “rare” has implied isolated, unique, or alone. But within the Kids First Data Resource Center (Kids First DRC), we know a powerful truth: rare doesn’t mean alone.
Robust Data
Scientific Research
Patients & Families
Congenital disorder research works like a Venn diagram, and the breakthroughs happen where stories, science, and shared data overlap. In that center space, researchers uncover unexpected genetic links and biological pathways that can lead to solutions not just for a single disorder, but sometimes for many at once.
You are Central to the Solution
The challenge posed by rare congenital disorders can be immense, but the opportunity for discovery is even greater. Children aren’t only dealing with a condition; they’re holding the critical keys to insights that can change lives. The Rare We Share is an invitation to see families, doctors, and researchers as part of a continuous, interlocking pattern of discovery.
Explore Kids First DRC to discover how shared data is accelerating research and learn about the role families play in advancing rare-disease research.