Pain Awareness Month

September is Pain Awareness Month!

Chronic pain affects millions—including people living with NF and SWN. Tumors, bone complications, migraines, and other NF-related issues can make pain a daily reality.

This month, we’re raising awareness about:

  • The impact of pain on individuals and families
  • The need for effective pain management strategies
  • Reducing stigma around pain
  • Supporting research for better treatments

Together, we can push for better pain care and understanding.

Here are just a few resources on pain:

2013 NF Midwest Be iNFormed article on pain

2026 NF Midwest Be iNFormed article update on pain

CTF Resources on Schwannomatosis Pain and Resiliency

Great Resources from the US Pain Foundation

NF1 Plexiform Neurofibroma Pain Scale Research Study

Recruiting for children (8+ years), adolescents, and adults with NF1 and plexiform neurofibromas (pNFs) for a research study to complete pain questionnaires electronically over a two-week period from home

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