About the Writers for Rare Book Project
What Is the Writers for Rare Book Project?
Writers for Rare is an anthology of stories told from different perspectives in the rare disease space: patients, caregivers, medical professionals, and industry allies.
These true stories are meant to inspire, educate, and give voice to the challenges and triumphs of the rare disease experience. Filled with emotion and raw authenticity, these personal accounts offer a unique perspective on the complexities of living with a rare disease.
Writers for Rare is slated for publication in August 2025. The submission deadline for chapter consideration is March 15, 2025.
Why Participate in the Writers for Rare Book Project?
At a time when biotechnology and research firms are increasingly focused on understanding the patient experience—and working in collaboration to develop treatments—this book offers an invaluable resource. It can serve as a guide in communicating the struggles, hopes, and resilience of the rare disease community, underscoring the importance of patient-led input in the research and development process.
And for those in the rare disease space, especially those newly diagnosed and their families, Writers for Rare offers support and validation. Our stories explore the emotional and practical aspects of living with a rare condition, sharing valuable lessons and insights to help others navigating similar challenges.
Although we are unable to offer monetary payment to our contributors, if your story is chosen for inclusion in our anthology, you will receive a print copy of Writers for Rare after publication.
Who’s Behind the Writers for Rare Book Project?
Patricia Geurds and Patricia Sullivan—or Patricia² as they call themselves—are the creative force behind Writers for Rare.
Patricia Geurds is a writer, rare disease advocate, and former teacher who is a mother to a beautiful daughter with FoxG1 syndrome, a rare neurodevelopment disorder.
Patricia Sullivan is an editor, writer, book coach, web designer, and SEO analyst who lives with acromegaly, a rare pituitary disorder.
Though they have unique experiences in the rare disease space, they also understand the commonalities inherent in the rare disease odyssey.
Both women volunteer with the National Organization for Rare Disorders (NORD). Patricia G. is NORD’s Volunteer Rare Disease Ambassador for New Jersey, and Patricia S. serves as the Volunteer Rare Disease Ambassador for North Carolina. That’s how their friendship and vision for the book began.
Our book project is a labor of love, and we’re dedicating our time and resources to turn our vision into a reality. Donations to support us in our work are always apreciated, as are words of encouragement.
