When I was first diagnosed with a rare disease, neuromyelitis optica spectrum disorder, I struggled to find stories of people truly thriving with rare disease.

What was missing were stories of possibility.

This Rare Life is a book project featuring profiles of young adults and the works of RareArtist Awardees whose lives have been shaped by their rare disease, but not defined by it. Through personal narratives, photography, artwork, and poetry, they share how they navigate the transition to adult care, school, college, careers, relationships, purpose, and everyday life while living with complex health conditions.

Rare diseases affect approximately 1 in 10 Americans, yet the lived experience behind those diagnoses often remains unseen. Too many patients and families face isolation, uncertainty, and a shortage of stories that offer hope, connection, and a vision for what is possible.

This project aims to change that by:

• Sharing wisdom of young adults living with rare disease

• Building connection and community for patients and families

• Highlighting the resilience, creativity, and possibility beyond diagnosis

• Increasing understanding among healthcare providers, policymakers, and the public

Your support will help fund portrait photography, editing, book design, printing, and distribution.

Suggested Giving Levels:

$25 - Help share a story

$50 - Build connection and hope within the rare disease community

$100 - Inspire public awareness

$250 - Champion a young adult rare disease voice

$500 - Bring a participant's story to life through photography and visual storytelling

$1000 - Advance the movement by helping bring this book to patients, families, healthcare providers, advocates, and the broader public

If we exceed our fundraising goal, additional funds will be used to donate books to hospitals, clinics, libraries, and rare disease organizations, so these stories can reach the people who need them most.

Thank you for helping bring these stories into the world.

Together, we can ensure that more patients and families see not only the challenges of rare disease, but also the possibilities.