The Special Call on Pain in neurofibromatosis (NF) and schwannomatosis (SWN) in collaboration with the American Academy of Pain Medicine (AAPM) has launched and seeks applications focused on pain in NF1, NF2-related schwannomatosis, and non-NF2-related schwannomatosis from basic biology to innovative clinical management.
A special focus is on SMARCB1-related and LZTR1-related schwannomatosis pain where significant difference in pain intensity and quality of life are reported but the reasons for these differences remain unknown.
The Children’s Tumor Foundation (CTF) hosts the NF Registry (www.nfregistry.org) and can help identify patients to participate in research studies.