By Ansley Franco
Rebecca Brown, MD, PhD has a unique set of skills that sets her apart in the medical world. She is the only dermatoneurooncologist in the world, a role that combines her expertise in neuro-oncology with a unique focus on the skin manifestations of neurofibromatosis (NF).
NF is a rare genetic condition that causes tumors to form throughout the body. The tumors are most often non-cancerous, but may affect the brain and spinal cord. Her research and clinical practice focus heavily on the skin, where many NF patients first notice symptoms that affect their confidence, social interactions and quality of life.
“Some of the tumors are large and grow along large nerves and large nerve Plexi, and those are called plexiform neurofibromas. Those have the ability to grow to a massive size that really impacts people’s lives, and also can develop into a cancer that’s almost universally fatal, ” Brown said.
She added that the medical community has subsequently paid less attention to patients with smaller tumors that have self-limited growth and no potential to become cancerous. “If you talk to people who have NF-1, the depression, anxiety, socioeconomic disadvantages associated with having these visible tumors all over the body were, in fact, one of their hugest concerns,” she said.
This gap between clinical focus and patient experience has shaped Brown’s approach to care. Her interest in NF is deeply personal, as her sister has the condition.
“Just having grown up alongside my sister and speaking with her a lot about what she’s going through on a day-to-day basis, it occurred to me pretty early on that what was really concerning people with neurofibromatosis was not being addressed by the medical community,” Brown said.
That perspective has informed Brown’s career-long mission, which is to align medical research and treatment priorities with what NF patients actually experience. Empathy and understanding for the patient experience is what Brown brings to her new leadership role at the UAB Neurofibromatosis Clinic after she saw an urgent need for NF expertise.
“Coming to UAB was definitely related to expanding patient access to an NF expert, because previously I was up at Mount Sinai in New York City, and there are three to five excellent NF care facilities within the New York City radius. And here in Alabama, we don’t have an NF expert within a multi-state area,” Brown said. “At the same time, my predecessor, Dr Bruce Korf, was retiring. He had a very large clinic here, where the patients were going to be left without a sufficient provider. So, to address the healthcare desert and care for patients whose physician, their dedicated physician, was retiring. Those were two big motivating reasons to come down to UAB.”
At UAB, Brown aims to continue the clinic’s legacy of research and compassionate care while broadening its reach to patients who may have limited access to specialists. She is especially focused on helping patients better understand their diagnosis and find community in what can often feel like an isolating condition.
“We’re trying to break down complex medical conditions into something that patients can understand, and then also to bring them together to form social communities that may extend across multiple states,” Brown said. “And if you think that you have difficulty remembering or pronouncing neurofibromatosis and schwannomatosis, imagine if you had no medical training and maybe not even a high school degree, which some of these patients are dealing with.”
Through education, empathy and scientific insight, Brown continues to try and bridge the gap between medical innovation and patient-centered care. She hosted her first 2025 Neurofibromatosis and Schwannomatosis Patients and Caregivers Symposium on Nov. 8.
The most meaningful part of Brown’s work, she said, is the connection she builds with her patients. She sees the impact of her care not only in clinical outcomes, but in the relief and reassurance patients feel after conversations that help them better understand their condition.
Her clinic at UAB is structured to give patients this level of attention and support. Full-day clinics, tailored treatment plans and multidisciplinary collaboration with other medical professionals at UAB help move the needle toward allowing every patient an opportunity to be given adequate care. With her unique expertise and the perspective she gained from her own family experience, Brown spends her days trying to make a difference for NF patients across Alabama and beyond.
