When my son was diagnosed with adrenal insufficiency 17 years ago, I entered the world of rare disease with no roadmap. Like so many families, we faced the endless cycle of explaining, waiting, and hoping. Along the way, I realized something life-changing: while each rare disease is uncommon, the rare community is not rare at all. Together, we are millions.
At United4Rare, we believe that innovation and equity must meet at the center of rare care. That means building tools to shorten diagnostic delays, ensuring that patient voices shape every trial, and creating pathways for solutions like CortiCheck to move from concept to clinic.
This blog will be our place to explore the rare disease landscape — the challenges, the opportunities, and the extraordinary resilience of our community. We’ll share stories from patients and caregivers, highlight the technologies changing what’s possible, and shine a light on where equity is still missing.
Rare disease can’t wait. And neither can we.
With gratitude,
Kirsten Norgaard
Founder, United4Rare
