Another chance to use your voice and raise awareness of NF2

American organisation ‘NF Mid-Atlantic’ ( are working with the department of genetics at Stevenson University in Maryland to gather research on the psychological effects of “looking different”.

There has been so little research on the psycho-social ramifications of living with this incurable, variable and sometimes disfiguring condition. NF Mid-Atlantic and their research team received a small grant to produce a survey and will analyse it for publication to help raise awareness of these issues and improve the quality of care given to people living with NF1, NF2 and Schwannomatosis.

The survey is completely anonymous and takes 5 minutes. Of course they want as many people as possible to complete this so they can have an accurate assessment of the needs. This will be a great help for people with NF.

To participate in the survey visit