World's largest gathering of NF community convenes in Arizona to advance research and care

From June 21 through June 27, the largest gathering of NF researchers, clinicians, and patients in the world will take place at the Fairmont Scottsdale Princess in Scottsdale, Arizona. NF is a group of genetic disorders that causes tumors to grow on nerves throughout the body, and affects 1 in 2,000 births of all populations equally. As such, NF affects millions worldwide, but is underrecognized. While there is one approved treatment for a small subgroup of NF patients with plexiform neurofibromas, there is no cure yet, and the vast majority of NF patients face serious health issues because of the condition. This gathering in Arizona, comprising two meetings, offers novel insights into NF research, generates enthusiasm that effective therapeutics are on the horizon, and fosters a deeper sense of community.

- NF Summit: patients, families, and caregivers will convene for three and a half days (June 21-24) to hear about promising research, meet with world-class NF experts, and participate in patient empowerment sessions. All forms of NF will be covered – neurofibromatosis type 1 (NF1) and all forms of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2), as well as quality of life issues for the myriad manifestations of NF, which can cause deafness, blindness, bone abnormalities, learning disabilities, disabling pain, and cancer.

Notable sessions at the NF Summit include:

-Clinical trials in nutraceuticals that are leading to less toxic treatment and prevention strategies through a specific dietary component.

-Panel discussion on alternative & traditional approaches to chronic pain

-Seminar for parents and other caregivers about navigating chronic illness; this session will explore the emotional and psychological impact of NF on parents, siblings, and other family members, as well as the practical challenges that arise when a family member has a chronic illness.

-The NF Clinical Trials Consortium session will review the structure, discuss trials completed or ongoing, and plans for the future of the Department of Defense-funded program.​​

- NF Conference: this four-day global meeting (June 24-27) attracts leading specialists from across a wide range of scientific disciplines and research and clinical backgrounds, all focused on improving outcomes for NF patients. This annual event is the most important date on the NF research calendar, and is critical to consensus building and advancing basic, translational, and clinical research in NF and related fields.

Among the key advances to be presented at the NF Conference are:

- dedicated afternoon to gene therapy in NF with a targeted focus on developing curative therapies that address the underlying genetic abnormalities in NF patients

- focus on pain, from basic science to preclinical and translational testing & development to novel imaging biomarkers to clinical management

- a full day of programming dedicated to all types of schwannomatosis, which includes NF2-related schwannomatosis (NF2), covering alternative cell models, new therapeutic approaches, and microenvironment of nerve tumors and the role of neurons in tumor growth

For more information about NF and the Children's Tumor Foundation, visit


The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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