This patient education program is sponsored by Travere Therapeutics.
Produced in collaboration with KDIGO, NephCure Kidney International, and Travere
Because there is currently no cure for focal segmental glomerulosclerosis (FSGS), patients often have to rely on their doctors to communicate treatment options and provide self-care steps to slow the disease and improve quality of life. However, you can still learn to recognize and address early signs and symptoms of FSGS, especially excess protein in urine. By doing so, you can improve your overall kidney health and reduce your risk of needing a transplant.
Find out the latest ways to combat FSGS by joining an expert panel of clinicians, a patient advocate, and a patient for a live interactive presentation, “Kidney Disease-Improving Global Outcomes (KDIGO): New Directions about FSGS Treatment and Why They Matter to Me."
The hour-long presentation will consist of 4 easy-to-understand modules on the guideline-driven management of FSGS and finding the best treatment for each patient:
- Module 1, “What is KDIGO and Why Are its Recommendations Important to Patients with FSGS?” will review KDIGO guidelines, how they were written, and how nephrologists use them.
- In Module 2, “Understanding the New Classification for FSGS,” you will learn key terms associated with FSGS, signs and symptoms of FSGS, and how doctors determine which FSGS type you have.
- Module 3, “How Does the New KDIGO Classification Help my Doctor and Me Decide on Treatment?”, will explore steps patients can take to slow down the disease, along with management recommendations for each type of FSGS.
- Finally, Module 4, “What’s Next for People with FSGS?”, will discuss how the treatment of FSGS could be better, the importance of clinical trials, and how you can be more involved in your kidney health.
Learning objectives for this program include:
- Understand how the KDIGO Clinical Practice Guideline for the Management of Glomerular Diseases helps you and your doctor make management decisions for your FSGS
- Understand that protein in your urine is a symptom of FSGS that needs to be addressed early
- Explore how new treatments for FSGS may help reduce protein in urine more than current treatments
Speakers
Jai Radhakrishnan MD, MS
Laura Mariani, MD, MS
Kelly Helm
Kimberly Queen
Jai Radhakrishnan MD, MS
Professor of Medicine, Columbia University Medical Center
Clinical Director, Division of Nephrology Columbia University Vagelos College of Physicians and Surgeons
Dr. Radhakrishnan is Professor of Medicine at Columbia University Medical Center and the Clinical Director of the Nephrology Division. His clinical and research interests are in glomerular diseases. He is an associate editor of Kidney International and founding editor/editor-in-chief of Kidney International Reports. He has served on educational committees with the American Society of Nephrology and the International Society of Nephrology and is a global education ambassador for the ISN. He has lectured extensively internationally and has received numerous awards for his educational and patient care-related achievements.
Laura Mariani, MD, MS
Assistant Professor of Medicine, Division of Nephrology
Univeristy of Michigan
Laura Mariani, MD, MS, is a nephrologist, clinical researcher, and Assistant Professor at the University of Michigan Division of Nephrology. Dr. Mariani is involved in several clinical and translational NIH-funded research studies in kidney diseases, including the Nephrotic Syndrome Study Network (NEPTUNE), the Cure Glomerulonephropathy (CureGN) Consortium, and the Kidney Precision Medicine Program (KPMP) Central Hub. Her research interests include observational studies in glomerular disease, developing and applying statistical methods for clinical outcome definition and prediction of kidney disease progression, and linking clinical phenotype to novel biomarkers and high dimensional omics data to better understand disease mechanisms that can be targeted for therapy in glomerular disease.
Kelly Helm
Executive Director of Patient Engagement
NephCure Kidney International
Kelly Helm serves as NephCure’s Executive Director of Patient Engagement, working directly with NephCure’s regional communities, volunteers and patients. She started with NephCure as a volunteer walk leader in 2010 after her daughter, Macy, was diagnosed with FSGS. After working as a regional coordinator for several years, she was promoted to a full-time employee in 2014. As a patient parent, Kelly has had 13 years of hands-on experience with the patient journey. She’s also spent the last nine years advocating for patient families, helping them make their voices heard, and moving the needle forward toward better treatments. Her favorite part of working for NephCure is providing hope for patients and their families and helping them feel less alone. Kelly works from her home office in Colorado Springs, Colorado. In her free time, she enjoys spending time with her husband, Brandon, her children, Macy and Max, and her dogs, Bentley and Dash.
Kimberly Queen
Patient with FSGS
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Jai Radhakrishnan MD, MS
Professor of Medicine, Columbia University Medical Center
Dr. Radhakrishnan is Professor of Medicine at Columbia University Medical Center and the Clinical Director of the Nephrology Division. His clinical and research interests are in glomerular diseases. He is an associate editor of Kidney International and founding editor/editor-in-chief of Kidney International Reports. He has served on educational committees with the American Society of Nephrology and the International Society of Nephrology and is a global education ambassador for the ISN. He has lectured extensively internationally and has received numerous awards for his educational and patient care-related achievements.
Clinical Director, Division of Nephrology Columbia University Vagelos College of Physicians and Surgeons -
Laura Mariani, MD, MS
Assistant Professor of Medicine, Division of Nephrology
Laura Mariani, MD, MS, is a nephrologist, clinical researcher, and Assistant Professor at the University of Michigan Division of Nephrology. Dr. Mariani is involved in several clinical and translational NIH-funded research studies in kidney diseases, including the Nephrotic Syndrome Study Network (NEPTUNE), the Cure Glomerulonephropathy (CureGN) Consortium, and the Kidney Precision Medicine Program (KPMP) Central Hub. Her research interests include observational studies in glomerular disease, developing and applying statistical methods for clinical outcome definition and prediction of kidney disease progression, and linking clinical phenotype to novel biomarkers and high dimensional omics data to better understand disease mechanisms that can be targeted for therapy in glomerular disease.
Univeristy of Michigan -
Kelly Helm
Executive Director of Patient Engagement
Kelly Helm serves as NephCure’s Executive Director of Patient Engagement, working directly with NephCure’s regional communities, volunteers and patients. She started with NephCure as a volunteer walk leader in 2010 after her daughter, Macy, was diagnosed with FSGS. After working as a regional coordinator for several years, she was promoted to a full-time employee in 2014. As a patient parent, Kelly has had 13 years of hands-on experience with the patient journey. She’s also spent the last nine years advocating for patient families, helping them make their voices heard, and moving the needle forward toward better treatments. Her favorite part of working for NephCure is providing hope for patients and their families and helping them feel less alone. Kelly works from her home office in Colorado Springs, Colorado. In her free time, she enjoys spending time with her husband, Brandon, her children, Macy and Max, and her dogs, Bentley and Dash.
NephCure Kidney International -
Kimberly Queen
Patient with FSGS
