This Rare Life is a collaborative storytelling project created by author, artist, and rare disease advocate Nell Choi, centered on the experience of growing up with rare disease and the journey from pediatric to adult care.

At its core, the project features young adults navigating this transition—stepping into adult healthcare systems, redefining independence, and shaping identity in the presence of chronic illness.

The book will also highlight select youth and sibling perspectives offering a more complete portrait of how rare disease shapes coming-of-age for both individuals and families.

Through recorded webinar conversations, portrait photography, visual art, poetry, and personal reflection, participants share their lived experiences: what has supported them, what has challenged them, and what they wish others understood about living with rare disease.

While each rare disease is individually uncommon, rare diseases collectively affect approximately 1 in 10 people. These stories bring visibility to a community that is widespread yet often unseen.

This Rare Life is not only about illness or healthcare transition; it is about becoming.

Becoming an adult. Becoming an advocate. Becoming a sibling shaped by care. Becoming someone who learns to live fully with uncertainty.

This Rare Life

Stories of identity, transition, and connection from young people living with rare disease

Currently in development.
Publication anticipated August 2026.

Upcoming Book!

Every rare life is part of a larger, shared human story.