Writers for Rare: An Anthology of Personal Stories from the Rare Disease Space

Name: Writers for Rare: An Anthology of Personal Stories from the Rare Disease Space
Brand: Three Crows Press, LLC
SKU: 9798993374802
Price: 2255.0 INR
Availability: InStock

by Patricia Sullivan , Matt Demczko , Patricia Sullivan

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ISBN13: 9798993374802
Binding: Paperback
Subject: N/A
Publisher: Three Crows Press, LLC
Publisher Imprint: Three Crows Press, LLC
Publication Date: October 4, 2025
Pages: 236
Original Price: GBP 19.95
Language: English
Edition: N/A
Item Weight: 323 grams
BISAC Subject(s): Diseases & Conditions / General

About The Book

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 an anthology of thirty-two candid stories told from different perspectives in the rare disease space: patients, caregivers, medical professionals, and community allies. This book challenges assumptions and invites deeper understanding of the rare disease odyssey. It's especially relevant for anyone living with a rare or chronic medical condition, navigating a life-altering diagnosis, caring for someone who is, or advancing new treatments and care. Ultimately, Writers for Rare is a reminder of the importance of storytelling and how it serves as a powerful bridge, helping us understand one another and shape a more compassionate society. This compelling collection is a testament to the bravery and resilience of the human spirit-a reminder that, while conditions may be rare, the human experience is shared. Stories connect us. Through storytelling, we can change how the world sees and supports those living with rare diseases, while also fostering greater awareness, empathy, and connection for everyone.

About The Author

Sullivan, Patricia: - Patricia Sullivan, MA, is an author, editor, book coach, and publisher. In 2019, she was diagnosed with acromegaly, a rare pituitary disorder. Patricia now serves as NORD's Rare Action Network State Ambassador for North Carolina. She holds an MA in English Literature and an MA in Counseling Psychology. Patricia is a former licensed psychotherapist and clinical director in the UCSF Department of Psychiatry. Patricia Geurds is a writer, author, and mother of five whose youngest daughter Kinsley was born with FOXG1 syndrome, an ultra-rare neurodevelopmental disorder. She is the NORD Rare Action Network State Ambassador for New Jersey and a member of New Jersey's Rare Disease Advisory Council. Patricia holds a BA in Education and American Studies and began her career as a second-grade teacher. Matthew Demczko, MD, is an attending pediatrician, Clinical Education & Fellowship Director and Inpatient Service Director with the Mitochondrial Medicine Program at Children's Hospital of Philadelphia. He is an Assistant Professor of Clinical Pediatrics in the Perelman School of Medicine at the University of Pennsylvania. Dr. Demczko is a graduate of Jefferson Medical College and the Jefferson/Nemours Pediatric Residency Program where he also served as Chief Resident.

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