Self-reported access to specialty clinics and receipt of health surveillance among U.S. patients with neurofibromatosis 1: a national survey

Self-reported access to specialty clinics and receipt of health surveillance among U.S. patients with neurofibromatosis 1: a national survey

Abstract Background Neurofibromatosis 1 (NF1) is a rare, neurogenetic disorder predisposing individuals to multiple tumors and other issues requiring expert care and regular health monitoring. We sought to assess U.S. patients’ access to specialized NF1 clinics and receipt of evidence-informed healt...

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Bibliographic Details
Main Authors: Vanessa L. Merker, Yidan Ma, Lori B. Chibnik, Heather B. Radtke, Kate Kelts, Kaleb Yohay, Nicole J. Ullrich, Scott R. Plotkin, Justin T. Jordan
Format: Article
Language:English
Published: BMC 2025-04-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Neurofibromatosis 1
Practice guidelines
Healthcare disparities
Rare diseases
Online Access:https://doi.org/10.1186/s13023-025-03677-5
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https://doi.org/10.1186/s13023-025-03677-5

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