By: Mallory Bachmann
The Norman Fixel Institute for Neurological Diseases at UF Health is launching the Isa Elaine Foundation Brain Iron Disorders Care Program on July 30, a new multidisciplinary clinic dedicated to providing specialized care for children and adults living with neurodegeneration with brain iron accumulation (NBIA) and related iron deposition disorders.
NBIA is a group of rare genetic disorders that cause iron to build up in the basal ganglia, a part of the brain that helps control movement. This buildup can lead to parkinsonism, dystonia, neuropsychiatric and vision symptoms.
To better serve patients with these rare conditions, Bhavana Patel, D.O., director of the program and a movement disorders and behavioral neurologist, will lead a dedicated clinic where patients can access comprehensive, team-based care.
Patients will benefit from an interdisciplinary team that includes movement disorders and behavioral neurologists, a pediatric neurologist, genetic counselor, dietitian, social worker and neurorehabilitation specialists. This collaborative approach ensures patients and families receive coordinated, specialized care tailored to their individual needs.
“I want every patient and family to know that they are not alone,” said Dr. Patel. “Although these disorders are rare, there is a growing community of clinicians, researchers, advocacy organizations and families dedicated to improving care and advancing treatments.”
The Fixel Institute is incredibly grateful for the support of the Isa Elaine Foundation, a nonprofit dedicated to advancing research for rare pediatric neurodegenerative diseases. Their support is helping to expand access to specialized care and resources for patients and families.
Reflecting the Fixel Institute’s mission to improve lives through co-located, interdisciplinary care, the new program embodies the philosophy of Executive Director Michael Okun, M.D., that “the patient is the sun,” with every aspect of care centered on patients and their families. According to Dr. Okun, specialized multidisciplinary centers like this one play an essential role in advancing neurological care.
“These centers become engines for innovation, clinical trials, education and hope, ensuring that even the rarest neurological diseases receive the attention and expertise they deserve,” said Dr. Okun.
To schedule an appointment or learn more about the Isa Elaine Foundation Brain Iron Disorders Care Program, call 352-294-5400 or visit the program webpage.
To support the Isa Elaine Foundation and help advance care and resources for individuals and families affected by brain iron disorders, consider making a donation today.