Neurofibromatosis Type 1: Connected to Care, Still Translating the Condition.
KEEP heard from 109 people with a doctor-confirmed NF1 diagnosis between May and October 2026. Most are connected to care, yet the work of understanding NF1 follows them home: 81% name a clinician involved in their care, but 61% of that group say most people do not understand what they live with. Risk and visibility shape daily life, with 62% worried their neurofibromas may become cancerous. The report shows how to support the interpretation work patients already do.
Key Highlights
62% worry neurofibromas may become cancerous
50% say NF1 has affected their mental health
82% very interested in new options or research
Overview
109 confirmed NF1 patients are connected to care yet still interpreting risk, managing visible symptoms, and explaining the condition on their own.
