The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital are conducting a research study to compare two programs that teach stress and symptom management skills for adults with NF1, NF2, or schwannomatosis. (This study is funded by the Department of Defense)

• 8 group sessions led by an MGH psychologist with expertise in NF.
• Completion of questionnaires on your own computer at the beginning, end, 6 months and 12 months after the sessions.
• All sessions will take place from your home, using Vidyo, a secure program you can use with a computer and a webcam to have live video-conferences, that we will help you install for free.
• Sessions are 1.5 hours long and held once a week.
• This study DOES NOT involve taking medication.
• This study DOES NOT involve travel to MGH.

The study is seeking individuals ages 18 and older who have a diagnosis of neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), or schwannomatosis.

If you participate in this research study, you will learn stress and symptom management skills that you can continue to use after the study. You will also interact with other adults with NF like yourself.

There is no cost to participate in this study.

If you would like to learn more about this research study, please contact the study coordinator, Sofia DiStefano, sdistefano1@mgh.harvard.edu, or the principal investigator, Ana-Maria Vranceanu, avranceanu@mgh.harvard.edu.

The National Neurofibromatosis Skin and Mental Health Survey collects information about Canadians living with neurofibromatosis type 1 (NF1) and their experiences with this disorder, particularly regarding cutaneous (skin-related) symptoms and their impact on mental health. The information gathered will then be analyzed and drafted into a report that will be used to better inform the public and the government about the cutaneous symptoms of NF1 and its mental health effects.

The survey can be accessed here: https://www.surveymonkey.com/r/LPGVZLK​ 

With this survey, it is our vision that the information collected will improve awareness about the various challenges associated with cutaneous symptoms of NF1 and alleviate the burden of surgery costs. Through this project, we hope to improve the physical and mental wellbeing of those affected by the skin-related symptoms of NF1.

If you have any questions or concerns, please feel free to contact the team leader, Muskaan Sachdeva at muskaan.sachdeva@mail.utoronto.ca

​Muskaan is a medical student at University of Toronto, and is also a graduate of the BHSc program at McMaster University. She is an avid supporter of mental health initiatives and is extremely interested in the field of psychodermatology: the connection between the mind and the skin. Through initiating and leading the Neurofibromatosis project, she aspires to understand the cutaneous manifestations of the condition and their effect on the patients’ mental health. She is a certified Zumba instructor who spends her free time learning different languages.