Writers for rare:
An Anthology of Personal Stories from the Rare Disease Space
Coming September 16, 2025.
Nearly 10% of the population lives with a rare medical condition, yet the personal experience of the rare disease journey often remains misunderstood or overlooked.
Writers for Rare is a collection of thirty-two stories told from different perspectives in the rare disease space: patients, caregivers, medical professionals, and industry allies.
Meant to give voice to the challenges and triumphs of those living with a rare condition, caring for someone affected, or working on behalf of the rare community, the book offers an inspiring translation of the rare disease odyssey.
We’re donating 5% of book sale proceeds to NORD’s Rare Action Network (RAN) to support their rare disease advocacy work.
“The stories shared within these pages are a testament to the other side of ‘rare’ and offer a unique opportunity to enter a world that many see, but few understand.”
— Matthew Demczko, MD, Clinical Education & Fellowship Director and Inpatient Service Director with the Mitochondrial Medicine Program at Children's Hospital of Philadelphia
Book cover: Bound for Breakthrough. Original artwork by Liz Pollock, 2024.
Artist statement: Together, we are all in the same boat, hoping for a better future fueled by funding, research, and compassion.