Enhancing Clinical Care for Neurofibromatosis and Schwannomatosis Patients
UF Health Jacksonville joins the NF Clinic Network, a Children’s Tumor Foundation initiative dedicated to providing high-quality patient-centered care for individuals living with neurofibromatosis or schwannomatosis, as a Specialty Program.
This new practice and collaboration reinforces UF Health Jacksonville’s commitment to improving outcomes for patients living with these complex genetic conditions.
Neurofibromatosis and schwannomatosis, collectively known as NF, affect one in 2,000 births worldwide, or more than 4 million people each year. These conditions can cause tumors to grow on nerves throughout the body, leading to complications such as vision or hearing loss, bone abnormalities, chronic pain, or even cancer.
“We are thrilled to welcome UF Health Jacksonville to the NF Clinic Network,” said Brigid Garelik, MD, chief medical officer of the Children’s Tumor Foundation. “By joining this collaborative network, UF Health is demonstrating its commitment to expert patient care that improves quality of life for those with NF. Together, we’re creating a future where every patient has access to the best possible treatment options, care, and outcomes.”
As a Specialty Program in the NF Clinic Network, the new practice in Jacksonville is committed to delivering specialized care. This designation highlights UF Health’s ability to address the unique needs of patients living with NF1, NF2-related schwannomatosis, and other forms of schwannomatosis, ensuring individuals and families receive critical and timely information, guidance, and resources needed to navigate their NF journey.
“UF Health Jacksonville is dedicated to improving the health and lives of patients throughout Northeast Florida, and this practice will provide life-changing care to those dealing with this immense challenge,” said Patrick L. Green, FACHE, SVP and Northeast Florida Regional President of UF Health. “This milestone underscores our focus on delivering leading-edge care to NF patients and their families in and around our community. We’re excited to collaborate with the Children’s Tumor Foundation and clinics throughout this network to advance treatments and improve lives.”
The NF Clinic Network, established in 2007, now comprises more than 70 clinics across the United States and Canada. By promoting collaboration among clinicians, researchers, and patients, the network is transforming the standard of care for NF. Overseen by CTF’s Clinical Care Advisory Board, or CCAB, the network integrates research into clinical practice to support patients and families navigating the complexities of NF.
“Patients and families navigating neurofibromatosis and schwannomatosis deserve access to the highest standard of care and the confidence that progress is being made every day,” said Annette Bakker, PhD, CEO of the Children’s Tumor Foundation. “By growing the NF Clinic Network, we’re not only ensuring patients have access to expert, compassionate care closer to home, but we’re also advancing research and innovation that give families hope for better treatments and outcomes.”
Visit ctf.org/doctor for more information about the NF Clinic Network and a complete list of participating clinics.
About the Children’s Tumor Foundation
The Children’s Tumor Foundation, or CTF, is a global leader and catalyst for advancing treatments for neurofibromatosis and schwannomatosis (collectively known as NF), genetic conditions that cause tumors to grow on nerves throughout the body and affect 1 in 2,000 births across all populations worldwide. As the driving force behind NF drug discovery and development, CTF unites patients, researchers, clinicians, and industry to propel innovative therapies from the lab to the clinic.
In addition to the NF Clinic Network, CTF’s groundbreaking initiatives include the NF Preclinical Hub, Platform Clinical Trials that accelerate the testing of multiple therapies, and a venture philanthropy model that turns promising ideas into life-changing realities. These efforts have led to the first FDA-approved drug for NF and advanced several others into late-stage clinical trials.
With a bold vision to bring five FDA-approved therapies to market and develop early detection tools within the next decade, CTF is rewriting the future of NF care for millions of patients worldwide.
Visit ctf.org to learn more.
CONTACTS:
Rebecca Harris
Director, PR, Children’s Tumor Foundation
646-738-8563
Dan Leveton
Media Relations Manager, UF Health Jacksonville
904-244-3268
