Families living with a rare disease learn to measure distance in flights. For most of the Southeast, expert care for NBIA and related brain iron disorders meant crossing the country. On the morning of July 30, 2026, that changed by a few hundred miles.
Three months after the Foundation’s $200,000 gift, the Isa Elaine Foundation Brain Iron Disorders Care Program opened at the Norman Fixel Institute for Neurological Diseases at UF Health in Gainesville. Family, friends, and the care team gathered outside the building before the first appointments began.
What opened that day
The program is a multidisciplinary clinic for children and adults living with neurodegeneration with brain iron accumulation (NBIA) and related iron-deposition disorders. It is directed by Dr. Bhavana Patel, DO, a movement disorders and behavioral neurologist at UF.
Rather than sending a family from specialist to specialist across months, the program brings the team to them in one visit: movement disorders and behavioral neurologists, a pediatric neurologist, a genetic counselor, a dietitian, a social worker, and neurorehabilitation specialists. A full appointment can run one to five hours, spread across more than one day if that serves the family better.
“I want every patient and family to know that they are not alone. Although these disorders are rare, there is a growing community of clinicians, researchers, advocacy organizations and families dedicated to improving care and advancing treatments.”
Dr. Bhavana Patel, program director, in UF Health’s announcement
The day itself
The Foundation exists because of one little girl, and she was there. The program carries her name so that the families who walk through those doors after her find something already waiting for them.
What a clinic changes
A diagnosis this rare usually leaves families doing the coordinating themselves: chasing referrals, repeating the same history to each new specialist, translating between doctors who have never seen the disease. A dedicated program takes that work off them. It also means the people seeing these patients are the same people studying them, so what is learned in an exam room can reach the lab, and the lab can reach back.
How to reach the program
Appointments can be made at 352-294-5400. You can read more on the program page at UF Health, or give to the program directly at UF.