Organizzazioni Supporto Neurofibromatosi: Risorse Nazionali e Internazionali

Principali Organizzazioni USA

• Children's Tumor Foundation (CTF): Non-profit leader; finanzia ricerca, supporta trial clinici, ospita NF Clinic Network, eventi famiglie. ctf.org
• Neurofibromatosis Network (NFN): Supporto pazienti, awareness, advocacy legislativa, programma borse studio. nfnetwork.org
• Neurofibromatosis Association of America (NFAA): Gruppi supporto regionali, educazione, grant ricerca.
• National Institute of Neurological Disorders and Stroke (NINDS): Ricerca federale; trial clinici NF, pubblicazioni. ninds.nih.gov
• National Organization for Rare Disorders (NORD): Programmi assistenza pazienti, advocacy malattie rare. rarediseases.org
• American Academy of Pediatrics (AAP): Linee guida cliniche cura pediatrica NF.
• March of Dimes: Prevenzione difetti nascita; risorse NF per famiglie.
• Genetics Home Reference (MedlinePlus): Info genetica NF consumer-friendly.

Centri Clinici Specializzati

• 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

Internazionali

• Neurofibromatosis Association (UK)
• Neurofibromatosis Society of Ontario (Canada)
• Neurofibromatosis Australia
• European NF Group (consorzio ricerca)