Neurofibromatosis Support Organizations: National and International Resources for Patients and Families

Neurofibromatosis (NF1, NF2, schwannomatosis) requires multidisciplinary care and lifelong support. These organizations provide education, advocacy, research funding, and clinical referrals.

Major US Organizations

• Children's Tumor Foundation (CTF): Leading nonprofit; funds research, supports clinical trials, hosts NF Clinic Network, family events. ctf.org
• Neurofibromatosis Network (NFN): Patient support, awareness, legislative advocacy, scholarship program. nfnetwork.org
• Neurofibromatosis Association of America (NFAA): Regional support groups, education, research grants.
• National Institute of Neurological Disorders and Stroke (NINDS): Federal research; NF clinical trials, publications. ninds.nih.gov
• National Organization for Rare Disorders (NORD): Patient assistance programs, rare disease advocacy. rarediseases.org
• American Academy of Pediatrics (AAP): Clinical guidance for pediatric NF care.
• March of Dimes: Birth defects prevention; NF resources for families.
• Genetics Home Reference (MedlinePlus): Consumer-friendly NF genetics info.

Specialized Clinical Centers

• Johns Hopkins Medicine Neurofibromatosis Center (Baltimore, MD)
• Mayo Clinic Neurofibromatosis Clinic (Rochester, MN; Phoenix, AZ; Jacksonville, FL)
• Children's Hospital of Philadelphia (CHOP) NF Center
• UCSF NF/Ras Pathway Clinic
• NYU Langone Comprehensive Neurofibromatosis Center

International

• Neurofibromatosis Association (UK)
• Neurofibromatosis Society of Ontario (Canada)
• Neurofibromatosis Australia
• European NF Group (research consortium)

Connect with these resources early—they empower informed decisions and community.