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We are proud to shine a spotlight on Dr. Arvind Madan, our NephCure Specialist of the Month for October. This recognition honors the exceptional contributions of NephCure Specialists to the field of nephrology, highlighting their impactful work, innovative projects, and dedication to supporting the rare kidney disease (RKD) community.
Dr. Arvind Madan is a board-certified nephrologist and is a partner physician and executive board member (vice president) at Central Florida Kidney Specialists (CFLKS) in Orlando, FL. He is the founder and president of NCCF.R (research division of CFLKS) where he is the principal investigator in numerous clinical trials. He is also the president of the Florida Society of Nephrology.
He is an assistant professor of internal medicine at the University of Central Florida (UCF) College of Medicine and assistant professor at the Orlando College of Osteopathic Medicine. He’s the Director of multiple DaVita Dialysis Units. Dr. Madan is also an attending nephrologist in the residency program at Orlando Regional Hospital System. He received his medical degree from Maulana Azad Medical College in New Delhi, India. He completed his residency in internal medicine at Nassau County Medical Center in East Meadow, NY. He then completed his fellowship in nephrology at the State University of New York (SUNY) Health Science Center (HSC) in Syracuse, NY.
In addition to his academic and clinical work supporting patients, Dr. Madan has collaborated closely with NephCure to expand access to treatment for individuals living with rare kidney diseases. Recently, NephCure had the opportunity to sit down with Dr. Madan to discuss FSGS and advances in rare kidney disease care. When asked what he finds most rewarding about working with this community, Dr. Madan shared
“The patients with RKD are scared, confused and looking for someone with experience in their disease to help guide them through this lifelong journey with the best possible outcome. Due to the very fact it is “rare”, not all nephrologists treat RKD. Nephrology has evolved tremendously and in particular RKD. This requires staying up to date on the latest research and developments in the understanding of the pathophysiology and the latest therapies to appropriately manage RKD.”
We understand how overwhelming and stressful it can feel to receive a rare kidney disease diagnosis. When we asked Dr. Madan what guidance he would offer to someone newly diagnosed with FSGS, he shared words of support and advice:
“There is a wide variety of possible causes of FSGS. It’s a pattern of injury that you see under the microscope. Therefore, finding a cause through further investigation (i.e., eliminating secondary origins, genetic testing) and appropriate treatment is the start. While it is one of the more difficult GN’s to treat, the treatment landscape is constantly evolving and while various therapeutic agents are currently available, many ongoing clinical trials offer viable therapeutic options. Since our practice participates in many of these clinical trials, our patients have the opportunity to consider participation locally. I tell patients that while an FSGS diagnosis can feel overwhelming and stressful, we have many more options today than we did in the past and educating themselves on their disease through social media groups and patient advocacy groups, like NephCure, can help patients feel more empowered.”
Having a connection to a supportive community is vital for patients with rare kidney diseases, allowing them to connect with others who truly understand their experiences. We asked Dr. Madan about the role patient advocacy organizations like NephCure play in bridging the gap between patients, caregivers, and specialists, and he shared:
“When patients receive a diagnosis, most will search online for more information, so we need organizations like NephCure to help guide patients and caregivers to the appropriate specialists in a timely manner, refer them to active research sites like ours, provide information on their disease and help connect them with others in similar situations.”
Dr. Madan’s dedication to research, patient care, and community support truly makes a difference in the lives of those affected by rare kidney diseases. As our NephCure Specialist of the Month for October, he exemplifies the power of expertise, compassion, and collaboration in helping patients navigate their journey with hope and confidence.
For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage.
