Every Rare Story Deserves to Be Heard.
Write4Rare helps patients, caregivers, physicians, researchers, and advocacy organizations transform lived experience into stories that educate, connect, and create change.
Whether you're sharing your family's journey, teaching through narrative medicine, or building awareness for a rare disease community, your story has the power to improve care.
Story is medicine.
For families living with rare disease, the diagnosis is only the beginning.
Stories help us process grief, advocate for better care, educate physicians, inspire researchers, and build stronger communities.
Write4Rare exists to help those stories find their voice.
Services
Story Doula™
Personal Narrative Coaching
One-on-one guidance for patients, parents, and caregivers who want to shape difficult experiences into meaningful stories.
Whether you're writing an op-ed, preparing for advocacy, creating a speech, or simply trying to understand your own journey, Heather helps bring clarity, confidence, and purpose to your story.
Narrative Medicine Workshops
Helping clinicians, researchers, and families use storytelling to strengthen communication, empathy, and patient-centered care.
Workshops include:
Family Storytelling
Physician Education
Research Communication
Advocacy Training
Creative Storytelling
Beyond traditional writing, Write4Rare develops storytelling projects that increase awareness and build community.
Examples include:
articles
advocacy campaigns
podcast development
interviews
educational content
nonprofit storytelling
awareness initiatives
Who I work with
Families & Caregivers
Finding language for experiences that often feel impossible to explain.
Rare Disease Organizations
Helping nonprofits tell stories that inspire donors, policymakers, and communities.
Physicians & Researchers
Bringing lived experience into education, research, and clinical care.
Journalists & Media
Connecting authentic patient voices with meaningful reporting.
REFRAME THE CONVERSATION
619.888.7773
Featured Work
Stories in Action
Real stories can change policy, improve healthcare, and help families feel less alone.
Story — 1
Springfield News-Leader
Written with Kacie Craig
Ghostwritten by Heather Bentley, Write4Rare
A powerful first-person account illustrating how Medicaid became essential to one family's survival while raising a child with SCN8A-related epilepsy.
Story — 2
Springfield News-Leader
Written with Kacie Craig
Ghostwritten by Heather Bentley, Write4Rare
A powerful first-person account illustrating how Medicaid became essential to one family's survival while raising a child with SCN8A-related epilepsy.
Ready to Tell Your Story?
Whether you're a parent navigating a rare diagnosis, a physician exploring narrative medicine, or an organization looking to amplify patient voices, I'd love to connect.