Recent News

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. 

We are incredibly proud to highlight Dr. Jessica Coleman, our NephCure Specialist of the Month for May.  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. Coleman is a board-certified specialist in both Nephrology and Internal Medicine. Her medical journey began at Georgia Tech, where she graduated with honors in Biochemistry and worked as a chemical engineer before pursuing her medical degree at Mercer University School of Medicine in Macon, Georgia. She went on to complete her residency and nephrology fellowship at the University of Kentucky, where she was later appointed chief fellow.

Today, Dr. Coleman practices privately in the Lowcountry region of Georgia and South Carolina, serving patients in the Beaufort, Hilton Head, and Savannah areas. She has been a keynote speaker at the American Society of Nephrology (ASN) and is a coauthor of a published article in the Journal of Cellular and Molecular Medicine.

NephCure sat down with Dr. Coleman to explore her passion for caring for patients with rare kidney disease.

When asked to explain how IgAN affects the patient’s kidneys, Dr. Coleman shared:

“I tell patients that they have an autoimmune disease where their body starts reacting to a specific antibody (something our body usually uses to “tag” foreign objects for destruction. Unfortunately, in IgA, our body reacts to this antibody and creates a bulky complex that then gets deposited in the kidney filters (the glomerulus). Once there, it starts a chain reaction of inflammation and mechanical obstruction that damages the filter and, as a result, causes irreversible kidney disease/destruction and fibrosis.”

With the rapid emergence of new clinical trials and treatment options, we asked Dr. Coleman how she keeps up with the latest advancements for her IgA nephropathy patients. She shared:

“I typically stay up to date on journals, go to as many conferences (American Society of Nephrology, National Kidney Foundation, etc) as I can as well as regional updates (for example, I’m at the Cleveland clinic right now for their Update on Nephrology) and have a  good relationship with pharmaceutical companies so that I can ensure that the appropriate treatment(s) reach the appropriate patient. I also follow social media platforms and routinely interact with other thought leaders to continue to adjust and titrate my formulary and approach”

When patients need additional personal support, Dr. Coleman often refers them to organizations such as NephCure, the IgAN Foundation, or the National Kidney Foundation. She also encourages patients to engage on social media, where they can connect with others who share the same diagnosis.

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. Andrew Bomback, our NephCure Specialist of the Month for April. This initiative recognizes the outstanding contributions of NephCure Specialists in the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Andrew S. Bomback, MD, MPH, is a nephrologist who specializes in glomerular diseases and resistant hypertension. He is Associate Professor of Medicine at Columbia University Medical Center. Dr. Bomback’s research interests focus on evaluating novel therapies for glomerular diseases. He currently serves as principal or co-investigator on clinical trials of new treatments for IgA nephropathy, membranous nephropathy, lupus glomerulonephritis, hereditary nephritis, C3 glomerulopathy, and focal segmental glomerulosclerosis.

NephCure sat down with Dr. Bomback to explore his background and experience in clinical trial awareness and participation with those living with rare kidney disease.

When asked about the reason why clinical trials are so important for rare kidney disease patients, Dr. Bomback shared:

“Clinical trials offer two important benefits for patients with glomerular diseases: (1) They help us answer important scientific questions, and (2) in glomerular diseases, rare conditions for which there either is no standard of care or the current standard of care yields suboptimal outcomes, they offer patients early access to new therapies that can potentially and hopefully change the natural history of their disease. When I first meet a patient who has just been diagnosed with glomerular disease, they always ask, “What’s going to happen to me and is there a therapy that can give me the best possible outcome?” Clinical trials are designed to answer those questions.”

Regarding his advice for patients who may be interested in participating in clinical trials, Dr. Bomback suggested:

“I let them know that being in a trial is their decision, and it has potential benefits, including getting their disease into remission, and risks, one of which is possibly being in a placebo arm (fortunately, many of the newer trials are incorporating an open label extension period so that even patients randomized to placebo eventually get the study drug). I also let them know that being in a trial requires more time and commitment than just being followed in a clinic. There are more visits to the site, and these visits are longer and more detailed. But there is a benefit to these increased “touches” with their provider. More eyes are on them, and more chances exist for us to know how they are faring.”

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. Daryl Crenshaw, our NephCure Specialist of the Month for March. This initiative recognizes the outstanding contributions of NephCure Specialists in the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

A proud native of Selma, Alabama, Dr. Crenshaw is a board-certified specialist in Internal Medicine and Nephrology. His journey began at Tulane University School of Medicine, followed by an Internal Medicine residency at The University of Alabama School of Medicine (UAB). During his residency, Dr. Crenshaw demonstrated exemplary leadership as Chief Medical Resident and earned the esteemed Tinsley Harrison M.D. Resident of the Year Award.

NephCure sat down with Dr. Crenshaw to explore his passion for caring for patients with rare kidney disease and address the health disparities within Black and African American communities.

When asked about the percentage of patients with African descent and their unique patient journeys, Dr. Crenshaw shared:

“Approximately 50% of my patients are of African descent. Many share unique challenges, including financial difficulties, particularly for men who face the prospect of starting dialysis and having to stop working. Additionally, mental health struggles are prevalent, with some patients expressing feelings of depression, anxiety, and even suicidal thoughts. They also face barriers to accessing quality food, which complicates their health management, despite many remaining highly compliant with their medications and dietary restrictions. These experiences highlight the need for a more holistic approach to care that addresses both the medical and socioeconomic aspects of their journey.”

Regarding awareness and access for African American patients, Dr. Crenshaw emphasized:

“I wish my African American patients had greater awareness of the importance of preemptive genetic testing, such as APOL1, to help identify their risk for kidney disease early. Additionally, better access to quality, nutritious foods to avoid the impacts of food deserts, along with improved mental health counseling, would greatly enhance overall health outcomes. Addressing these areas could significantly reduce the disproportionate burden of chronic diseases in the African American community.”

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. Frederick Kaskel, our NephCure Specialist of the Month for February. This initiative recognizes the outstanding contributions of NephCure Specialists in the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Dr. Frederick Kaskel, Chief Emeritus Pediatric Nephrology, Children’s Hospital at Montefiore, Albert Einstein College of Medicine, is a translational investigator with expertise in basic renal physiology and research in glomerular disease and chronic kidney failure in children.

Throughout his career, he has demonstrated successful experiences in leading national and international scientific activities, such as the Principal Investigator of one of the few NIH clinical trials funded by NIDDK on the treatment of Focal Segmental Glomerulosclerosis Clinical Trial, President of the 15^th Scientific Congress of the International Pediatric Nephrology Association and former President of the American Society of Pediatric Nephrology.

Reflecting on his history with NephCure and its patient community, Dr. Kaskel shared, “As a pediatric nephrologist I have always considered it a privilege to have the fortunate opportunity to become part of a family’s personal interactions in the care of the patient.  The concept of ‘family-centered care’ encompasses everything that we should acknowledge in providing assistance and treatments for the family and their loved ones.  The NephCure patient community makes this goal achievable by providing a network for trusted interactions.”

Dr. Kaskel is currently optimistic about the impressive advancements in the early diagnosis and identifying the causes of rare kidney diseases, such as FSGS and IgA Nephropathy among others, that have resulted in clinical trials of targeted therapies. 

“The number of such trials has impressively increased over the past five years with promising long-term outcomes and preservation of kidney function.  These advances extend throughout the life course from early childhood to older age and hold the potential for eventual gene therapies for various congenital renal disorders.”

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. Joshua J. Zaritsky, our NephCure Specialist of the Month for January. This initiative recognizes the outstanding contributions of NephCure Specialists in the field of nephrology, spotlighting their work, projects, accomplishments, and valuable advice to the rare kidney disease (RKD) patient community.

Dr. Zaritsky is a pediatric nephrologist at Phoenix Children’s Hospital in Phoenix, Arizona. He earned his medical degree and PhD from Stanford Medical School, followed by a pediatric nephrology residency at Denver Children’s Hospital and fellowship in pediatric nephrology from UCLA School of Medicine. Board certified in pediatrics and pediatric nephrology, Dr. Zaritsky specializes in in a wide range of kidney disorders, from common conditions such as kidney stones,  to rare disorders such as nephrotic syndrome, cystinosis, and X-linked hypophosphatemia.

Reflecting on his career path, Dr. Zaritsky shared, “I would say glomerular disease chose me! Also, I have always been drawn to the diagnosis and treatment of rare disease.” His passion for this field is evident in his dedication to advancing care and treatment options for patients with RKD. 

In his current role, Dr. Zaritsky works on several groundbreaking clinical research initiatives focused on rare kidney diseases, including the ACTION3 FSGS Study, the Liposorber Trial for Pediatric Patients with FSGS, and the Voclosporin in Adolescents with Lupus Nephritis study. His research aims to improve treatments and outcomes for patients, providing hope and better care for those living with rare kidney conditions.

When asked about his advice for newly diagnosed RKD patients, Dr. Zaritsky emphasized the importance of trust and support: 

 “Find a health care team that you trust, and to check out NephCure!” 

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