NF1 is a genetic disorder affecting many different tissues with both tumor and non-tumor symptoms, including multiple neurological complications. Sleep disturbances are a commonly reported symptom in patients with NF1 but have received little attention to date.
We have two active studies at this time: the NF1 Sleep Study and the NF1 Sleep Health Survey.
Through these studies, we hope to evaluate sleep characteristics in large patient cohorts, furthering our understanding of how patients with NF1 may experience sleep differently, and its effects on cognition and quality of life.
We are eager to learn from patients and collaborate with advocacy groups, please get in touch!