Welcome to NF-Web

The first online mind-body program for adults with neurofibromatosis

Watch this short video from Dr. Ethan Lester about NF-Web

NF-Web is an online mind-body program for adults with neurofibromatosis

NF-Web is an online, web-based adaptation of the Relaxation Response Resiliency Program for Neurofibromatosis (3RP-NF) developed at the Center for Health Outcomes and Interdisciplinary Research (CHOIR). The 3RP-NF was adapted from the SMART program developed by the Benson Henry Institute for Mind-Body Medicine at Massachusetts General Hospital.

Click the blue bold text to learn more about these programs!

NF-Web is self-guided and meant to be completed at your own pace

NF-Web has short video lessons throughout the program, as well as knowledge check quizzes to help you learn the skills and apply them to every day life.

There is never any pressure to complete the program in a particular timeframe, and you always have the option of when you want to log in and complete each lesson.

NF-Web is the first online mind-body program specifically tailored for people with NF.

Form our ongoing live video clinical trial funded by the Department of Defense (DoD), as well as qualitative research from previous participants in our resiliency program, we found that many people who participated in our resiliency program had significant improvements in their stress and overall quality of life.

Still, even with virtual adaptations, roughly one in three patients who reached out to participate were unable to because of barriers such as scheduling, time commitment, appearance concerns (e.g. cutaneous and plexiform neurofibromas with facial tumors, palsy, café au lait spots, freckling), social anxiety, and low self-esteem, . Although our program was successful of helping participants with NF improve their self-image through healthy coping skills, those who are in most need were not enrolling.

NF-Web Support

NF-Web stands on the shoulders of giants. An incredible multidisciplinary team at Massachusetts General Hospital has dedicated countless hours on the development and implementation of mind body interventions to improve resiliency and well-being. An enormous amount of credit is due to the team at the Benson Henry Institute for Mind Body Medicine, who created the SMART program which has wide reaching impact for many medical and nonmedical populations. Without their contributions, this work would not be possible. Please click the blue links to visit their website and read their research article to learn more about BHI and the SMART Program.

From those programmatic foundations, the NF-Web program was then support on both the clinical science (research, development, adaptation) and grant funds awarded to Dr. Ana Maria Vranceanu (Massachusetts General Hospital) by the Children's Tumor Foundation (CTF). These funds have supported three separate clinical trials amounting close to $500,000 and several high quality, peer-reviewed publications. This preliminary work also supported future awards from he Department of Defense to test the efficacy of this intervention in adults (18+) with NF1, NF2, and schwannomatosis, and youth (12-17) with NF1 and NF2. These trials are currently ongoing and receive ongoing referral support from CTF and other local and regional chapters.

With initial grants from CTF, we also received generous grant funding and support from three separate organizations  - NF Northeast, NF Midwest, and the Texas Neurofibromatosis Foundation.

We have spent countless hours researching, adapting, and developing this resource to help people just like you. More importantly, people with NF who have completed NF-Web have generously given their feedback to make this program even better (THANK YOU!).By participating, you are also helping us make this program even more useful for those who use it after you!

And of course, we could not have completed this work without our sponsors:

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The Center for Health Outcomes and Interdisciplinary Research (CHOIR)

Massachusetts General Hospital/Harvard Medical School

1 Bowdoin Square, Ste 100 Boston MA 02114