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The growing NephCure Specialists program connects more patients and families to expert care for rare kidney diseases.

PHILADELPHIA, PA. (February 12, 2026) — NephCure, the leading nonprofit organization dedicated to creating equitable health access and improving outcomes for people living with rare, protein-spilling kidney diseases, announced the addition of a new cohort of 35 new NephCure Specialists, bringing the total number of specialists in their network to 207.

About the NephCure Specialist Program 

The NephCure Specialist program connects patients and caregivers with nephrologists who have deep expertise in focal segmental glomerulosclerosis (FSGS), IgA nephropathy (IgAN), membranous nephropathy(MN), and other rare kidney diseases (RKD). Specialists in the program demonstrate a commitment to patient-centered care, research, education, and collaboration with the rare kidney disease community.

“The NephCure Specialist Program has connected me with a wonderful community of people working to improve the lives of people living with glomerular disease. It has also been inspiring and intellectually stimulating for me to be a part of NephCure’s scientific and academic efforts,” Dr. Myda Khalid, NephCure Specialist and Associate Professor at Indiana University-School of Medicine said.

This group of carefully vetted physicians are not only leaders in clinical care, but also active champions of research, education, and advocacy within the kidney disease community. Their expertise helps ensure that patients receive accurate diagnoses, access to cutting-edge treatments, and the guidance needed to navigate complex and often life-altering conditions.

Through this program, NephCure aims to reduce diagnostic delays, expand awareness of clinical trial opportunities, and strengthen the connection between research advancements and real-world patient care.

Welcoming the 2025 NephCure Specialists

The 35 newly recognized NephCure Specialists represent a diverse group of adult and pediatric nephrologists across academic medical centers and community-based practices. Together, they bring expertise spanning clinical care, translational research, and leadership in glomerular disease programs.

Newly Recognized NephCure Specialists in 2025

To read more about each physician, and to find a NephCure Specialist near you, click here.  Are you a healthcare provider interested in becoming a NephCure Specialist or collaborating with the program? Click here to learn more and to nominate yourself or a colleague.

Thank You to Our Sponsors

NephCure gratefully acknowledges the generous support of our 2025 sponsors: Calliditas Therapeutics, Travere Therapeutics, ANI Pharmaceuticals, Alexion, Mallinckrodt Pharmaceuticals. We are thankful for their continued partnership and commitment to advancing research, education, and innovation in the rare kidney disease space. 

About NephCure

NephCure’s mission is to ensure that all individuals with rare, protein-spilling kidney disease have equitable access to the care and treatments that offer them the best kidney health outcome possible. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 60 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.

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. 

We are proud to shine a spotlight on Dr. Dana Rizk, our NephCure Specialist of the Month for August. 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. Rizk is a board-certified adult nephrologist and Professor of Medicine in the Division of Nephrology at the University of Alabama at Birmingham. She earned her medical degree from the American University of Beirut, followed by her residency and fellowship at Emory University Hospital.

Her clinical and research expertise focuses on glomerular diseases, with a special emphasis on IgA nephropathy (IgAN). Dr. Rizk has served as a principal investigator for numerous clinical trials and is deeply involved in multidisciplinary research aimed at advancing understanding and treatment of IgAN. Since 2015, she has led the Division of Nephrology’s Clinical Trials Research program, and since 2019, she has also served as Medical Director for the Clinical Trials Administrative Office.

Beyond her academic and research accomplishments, Dr. Rizk works closely with NephCure to help identify barriers to timely diagnosis and effective treatment for patients living with IgAN. Her commitment ensures that patient voices are heard and that care continues to move toward better, more accessible solutions.

To help patients better understand this rare condition, we asked Dr. Rizk to explain what IgA nephropathy is and how it affects the kidneys. Here’s how she described it: 

“IgAN is a rare kidney disease characterized by the accumulation of IgA in the glomeruli (the filtering units of the kidneys) that ultimately results in inflammation and scarring leading to loss of kidney function over time. It is an autoimmune disease that requires multiple steps or “hits” to develop. The first step is an increase in immunoglobulin A protein (IgA) lacking specific sugars (galactose) also known as Galactose-deficient IgA. This is then recognized by antibodies that bind to galactose deficient IgA and lead to the formation of circulating immune complexes. These immune complexes ultimately deposit in the kidneys where they trigger a cascade of events resulting in inflammation, fibrosis and ultimately loss of kidney function in a subset of patients.”

We know that conversations about treatment, especially for rare kidney diseases can sometimes feel overwhelming. To help, we asked Dr. Rizk to share her advice for patients on how to approach these discussions with their physicians, including conversations about clinical trial opportunities. Here’s what she had to say: 

“Patients should come to their visits prepared to discuss treatment options. Any time they are considering a treatment they should evaluate with their doctor how will this treatment affects the disease and ultimately protects their kidneys. Additionally they should get familiar with common side effects they might experience while taking the treatment. When I talk to my patients about treatment options I mention to them clinical trial opportunities and remind them that participation in clinical trials is an option to consider to have access to new and exciting therapies that are being evaluated.”

Being diagnosed with a rare kidney disease can bring many questions—and often, uncertainty—about how the condition might progress over time. We asked Dr. Rizk, a glomerular disease specialist, how she helps her patients cope with and navigate this uncertainty. Here’s what she shared: 

“I discuss with patients that at the time of diagnosis we know of certain clinical, laboratory and pathologic findings that are risk factors for their disease progression. Some of these risks are however modifiable and with treatment we could change the course of their kidney disease. Besides medications, lifestyle changes are also important and contribute to their overall health. To monitor their progress we will be checking periodically labs including kidney function tests, urinalyses and urine protein levels. Patients need to keep in mind that all labs have inherent variability so we often focus on lab trends over time to make therapeutic decisions.”

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage. 

We are incredibly proud to highlight Dr. Guillermo Hidalgo, our NephCure Specialist of the Month for July. This initiative recognizes the outstanding contributions of NephCure Specialists to the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Dr. Guillermo Hidalgo is a board-certified pediatric nephrologist at Hackensack University Medical Center and serves as the Division Chief of Pediatric Nephrology at K. Hovnanian Children’s Hospital in New Jersey. He earned his medical degree from the University of Salvador and completed both his residency and fellowship in pediatric nephrology at SUNY Downstate Medical Center.

Dr. Hidalgo’s clinical expertise includes congenital kidney anomalies, pediatric hypertension, chronic kidney disease (CKD), acute kidney injury, dialysis, and kidney transplantation. His research interests focus on the impact of socioeconomic factors on CKD progression, environmental nephrotoxicity, nephrotic syndrome, and glomerulonephritis.

Dr. Hidalgo has been an active participant in NephCure’s Rare Kidneys on the Hill Day and a dedicated supporter of NephCure’s broader advocacy initiatives. In anticipation of this year’s event, taking place on July 23rd and 24th in Washington, D.C., NephCure sat down with Dr. Hidalgo to learn more about his deep commitment to patient care and advocacy.

We asked him why it’s so important for patients, specialists, and experts to engage in advocacy efforts—and here’s what he had to say:

“Being involved in advocacy efforts is first a privilege and a responsibility to give voice to millions (37 M) of patients with rare kidney diseases in the US who may not have their voices being heard. It is of highest importance.”

Participating in a Hill Day for the first time can feel intimidating, especially for those new to advocacy. To help ease those concerns, we asked Dr. Hidalgo to share his advice for patients who may feel hesitant about speaking up or engaging in legislative advocacy. Here’s what he shared: 

“Interest and engage yourselves into advocacy (by any means) towards your own needs and the needs of millions of patients suffering through the same severe hardships of rare kidney diseases.”

Lastly, we asked Dr. Hidalgo to share his insights on the New Era of Preventing End-Stage Kidney Disease Act H.R. 1518 and how it affects patients’ access to care and their ability to communicate with healthcare providers. Here’s what he had to say:

“Importantly, in the US the best way to make long lasting changes is through legislation. It is important to network and bring about high awareness of the profound impact that rare kidney diseases have in the US population. It is supremely important to invest in early diagnosis and preventive measures of rare renal disease progression towards the need for dialysis.  Rare kidney diseases leading to the need for dialysis have a profound, deleterious economic, health and mental health impact on millions of lives and families all across the land. There is around 124 billion cost of its care, massive loss of quality of life, significant loss of individual and family productive lives, and progressive aggregating numbers to the waiting list of renal transplants.”

If you would like to learn more about the New Eras of Preventing End-Stage Kidney Disease Act H.R. 1518, you can click here.

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage. 

We are incredibly proud to highlight Dr. Gabriel Cara Fuentes, our NephCure Specialist of the Month for June.  This initiative recognizes the outstanding contributions of NephCure Specialists to the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Gabriel Cara Fuentes, MD, PhD, is a pediatric nephrologist and director of the Glomerular Disease Clinic at Nationwide Children’s Hospital. He is an assistant professor of pediatrics at The Ohio State University and a principal investigator at the Kidney and Urinary Tract Center.  Dr. Cara Fuentes earned his medical degree from the University of Granada Spain and completed his pediatric residency training at Torrecardenas Hospital in Spain and at the University of Florida.  His clinical interests include glomerular diseases such as nephrotic syndrome, MCD, FSGS, IgAN as well as other proteinuric kidney diseases such as Alport syndrome. His NIH-funded research is focused on understanding the mechanisms responsible for proteinuria in children with protein-spilling kidney diseases.

NephCure sat down with Dr. Cara Fuentes to explore his passion for caring for patients with rare kidney disease.

Since FSGS Awareness Day is on June 10th, we asked Dr. Cara Fuentes why it’s so important for patients diagnosed with FSGS to connect with a glomerular disease specialist. Here’s what he shared: 

“Because FSGS is a rare condition, it is important to connect with glomerular disease specialists to ensure a prompt and accurate diagnosis to help decide on the best therapeutic and provide accurate information about outcomes, etc. For those types of FSGS in which doctors cannot identify a particular cause, also known as primary FSGS, the treatment consists of immunosuppressive therapies. These are not necessarily benign medications, so connecting with specialists in glomerular diseases is important to discuss the best potential therapies for a particular patient. This is very important given how fast the therapeutic landscape is evolving for patients with FSGS. Over the last few years, we have witnessed an increase in clinical trials testing novel targeted therapies. Thus, connecting with experts in glomerular diseases may help patients to stay tuned regarding potential clinical trials that could potentially benefit their health.” 

Feeling supported during a doctor’s visit can make a big difference. That’s why we asked Dr. Cara Fuentes how he makes sure his patients always feel cared for and heard. Here’s what he shared with us: 

“First, I think the key is to listen to our patients. Every patient experiences the disease and/or therapies and/or disease uncertainties in a particular manner, so to understand this, doctors first need to listen. Second, as a provider, I think it is important to educate patients about the disease and to be transparent with what we and we do not know, what to watch out for, what to expect or not, etc., so they need to be well informed and to advocate for themselves as well. In this regard, platforms like NephCure are critical for our patients. Third, it is important that clinicians not simply focus on “numbers” such proteinuria or kidney function, but rather see the patient as a whole, and help address other aspects such as mental health, nutritional status, etc. This is particularly important for vulnerable populations such as children. So, clinicians need to address not “only” the kidney disease but also facilitate access to nutritionists, social workers, psychologists, etc.  Fourth, in the case of children, while the patient is a child, this diagnosis will have an impact on the whole family, so it is important to be keep this in mind and to provide support as necessary/feasible.”

With so many new treatments on the horizon and exciting research underway, we asked Dr. Cara Fuentes to tell us more about the work being done at the Cara Fuentes Lab and the studies they’re currently focused on.

“In our lab, we are trying to identify molecules that make the kidney filters “leaky” and that help predict clinical outcomes and response to therapies. These are key approaches to discover novel therapies to help clinicians to individualize care as each patient has its own journey with the disease. Specifically, we are investigating how the lining of the blood vessels within the kidney may contribute to the protein leak, and we are looking for strategies to restore the integrity of the kidney filter.”

For more information about NephCure Specialists and to find rare kidney disease experts in your area visit, NephCure’s Find a Specialist webpage.