calendarLettas Fight 5k Walk/Run for NF: Sat April 5, 2025

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The 1722 Network

The 1722 Network, named after the chromosomes affected by NF (Chromosome 17 for NF1 and Chromosome 22 for NF2), serves as a comprehensive resource hub for individuals and families navigating the complexities of Neurofibromatosis. Understanding that knowledge is power in the fight against NF, this network connects patients, families, and healthcare providers with valuable information and resources about clinical trials, research, and specialized treatment centers across the United States. In collaboration with the National NF Network, and with aspirations to work alongside the University of Florida Center for Excellence in NF Research, we're committed to sharing vital resources and information with the NF community.

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Resources

Samantha Blain - PEM (Patient Education Manager)

Patient Education Manager for Neurofibromatosis Type 1 with Plexiform Neurofibromas (NF1 PN) Call 1.786.670.1858 for more information

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National NF Network - Understanding NF

Comprehensive resource explaining the basics of Neurofibromatosis, symptoms, and management strategies for patients and families.

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University of Florida Center for Excellence in Neurofibromatosis Research

Leading research center dedicated to advancing NF treatment through clinical care, research, and education programs.

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Mayo Clinic Neurofibromatosis Clinic

World-renowned medical center offering specialized diagnosis, treatment, and management for all types of neurofibromatosis.

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Moffitt Cancer Center - NF Information

Cancer center providing specialized information on NF-related tumors, treatment options, and clinical trials.

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Alexion - NF1 PN Treatment Information

Information about innovative treatments for NF1 with plexiform neurofibromas from a leading pharmaceutical company.

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NF1 Research Project

Collaborative research initiative focused on developing new treatments and understanding the genetic basis of NF1.

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University of Miami Miller School NF2 Clinical Trial

Information about groundbreaking clinical trials specifically targeting NF2 tumors at the University of Miami.

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ClinicalTrials.gov - NF Studies

Database of active clinical trials for neurofibromatosis, allowing patients to find and potentially participate in cutting-edge research.

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