Rareatives is a patient-led publication where the unique stories of the rare disease community become headline news. We’re flipping the script on rare diseases. Not just awareness — action. Your story could spark the next big change.

Rareatives is led by me, Jessica Lynn, a rare disease journalist and 2x conference speaker on the importance of storytelling in the rare community.

After being diagnosed with Kawasaki disease as a child, I became fascinated with the rare disease community. As I began working in the rare disease space in 2020, I noticed something concerning. So many people had stories to tell – but seemed to lack the space to share.

My own rare journey was not just in childhood, but extended into adulthood as I began searching for answers to why I so often grappled with bronchitis and sinus issues. Years later, my immunologist is still working at it – and I’ve gotten an even more in-depth look at how the medical system operates.

My goal is for Rareatives to be a community center. A place that nurtures our voices. That advocates for change. That encourages researchers, doctors, and the broader public to take note.

Are you ready to rewrite the narrative?