Mortality

As we approach Rare Disease Day 2025, I find myself reflecting on how far we’ve come. It was just 11 years ago this month that DADA2 was officially recognized as a rare disease. While we are all too familiar with the challenges faced by rare disease families, Rare Disease Day is also a time to acknowledge the strength, progress, and sense of community that have emerged from our shared journeys. To borrow the words of a new member of our community, visual artist Ellie Pritts, these past 11 years have truly been “a journey of adaptation and resilience.”