NF Stories
These stories highlight the journeys of patients and families living with neurofibromatosis. Each is unique but they all share the common thread of individuals living their best life despite the NF diagnosis.
We hope these stories inspire you and remind you that you are not alone on the NF journey.
Individuals with NF1
Living with NF: What Trauma, Healing, and Empathy Taught Me
Living with Visible NF: Finding Community, Faith, and Belonging
When Visibility Becomes Power: One Woman’s Experience with NF1
When You Become the Expert: Navigating NF Without a Clinic
From Diagnosis to Independence: An Adult Life with NF1
Considering Clinical Trials for NF1: One Family’s Experience
Raising Twins with NF: Visibility, Courage, and Living Fully
Finding Belonging: A Young Adult’s NF1 Journey
Individuals with NF2-SWN
Still Emily: Living with NF2 and Finding Hope
Never Give Up: Two Sisters, One Family, and Life with NF2
NF Runs Through Our Family: But It Doesn’t Define Us
Share your own story
Whether you live with NF, care for someone who does, or support the community in another way, your experience helps others.