Finding Your Voice: Writing About Your Rare Disease Story
A powerful talk with rare disease advocates Erin Paterson and Laura Will on turning pain into purpose through storytelling and advocacy.
Watch an intimate and inspiring conversation between Erin Paterson, an internationally recognized rare disease advocate and bestselling author, and Laura Will, a nurse practitioner, writer, and mother of a child with a rare brain malformation. Together, they explore the complexities of living with and caring for individuals with rare diseases, sharing personal stories, coping strategies, and the power of community. In this webinar, they discuss how and why you might want to share your rare story, the many ways to express challenges, and the power of writing it down.
About the Know Rare Author Series
This webinar is part of the kick-off event to a series connecting with rare patients, caregivers, and siblings who have become authors, followed by a writing workshop series coming in Fall 2025. Let’s get the conversation started.
About the Speakers
Erin Paterson
Erin is a rare disease advocate, author, and founder of Lemonade Press, a publishing company dedicated to amplifying voices from underrepresented medical communities. As both a caregiver and patient, Erin brings a unique perspective to her advocacy work, aiming to bridge the gap between patients and the broader healthcare community.
Website: https://www.erinpaterson.com
Lemonade Press: https://lemonadecommunity.com
Instagram: @erinpaterson_allgoodthings
Laura Will
Laura is a nurse practitioner, writer, and mother to a child with a rare brain malformation called polymicrogyria. Through her blog, A Dragon Mom's Words, she shares her family's journey, offering support and insight to others navigating similar paths. Laura also contributes to the Rare Resiliency column on Know Rare, focusing on the protective role of resilience in the face of chronic and acute stress.
Website: https://www.adragonmomswords.com
Instagram: @lauramonroewill
