Living with Neurofibromatosis – NF1, NF2-related Schwannomatosis, or Schwannomatosis – can be challenging and can affect many parts of daily life.
Through the Rare Barometer study, we want to better understand your experiences — how you manage stress, study or work, and stay connected with your community while living with NF, a rare or undiagnosed condition.
The results of this global study will help NF Patients United and patient organisations advocate for better, more personalised support and solutions for people living with Neurofibromatosis and their families — so everyone can live life to the fullest.
We need your voice!
This survey is open to everyone affected by NF1, NF2-related Schwannomatosis, or Schwannomatosis — including family members — from any country. It’s available in 25 languages and takes about 20 minutes to complete.
👉 Take the survey here: tiny.cc/RB-MH
ℹ️ More information: tiny.cc/RB-MH-info
The deadline for submitting answers has been extended:
the study is open until December 14th, 2025.
Please share your experience in the questionnaire:
Why your participation matters
The results of this study will give us a clearer picture of what people with Neurofibromatosis and their families truly need in daily life. With your input, NF Patients organisations can advocate for better care, support, and policies — helping everyone affected by NF to live life to the fullest.
You can find more information on the survey here: tiny.cc/RB-MH-info
Together We Can Make a Difference
Thank you very much for taking part and helping us make a difference for the NF community worldwide!
If you have any questions while taking part in this survey, you can contact rare.barometer@eurordis.org
Rare Barometer complies with the General Data Protection Regulation (GDPR).
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