Unmet Needs of Patients Living With NF1-PN


Summary for Physicians

Unmet Needs in NF1-PN

Patients with neurofibromatosis type 1–associated plexiform neurofibromas (NF1-PN) face significant gaps in care, particularly related to effective treatment options for tumor management, especially for those with large or symptomatic tumors. Pain management, psychosocial support, and malignant transformation prevention remain major challenges. Limited treatment options exist for slowing tumor growth or alleviating complications, and there is a need for more personalized care.

Addressing Gaps in Care

To improve outcomes and quality of life, strategies should focus on early intervention, improving access to multidisciplinary care, advancing targeted therapies, and enhancing psychosocial support. Ongoing research into better treatments and more effective pain management and surveillance protocols is critical for addressing these unmet needs.



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