Working to support families, educate our community, and fight Nephrotic Syndrome
COLLABORATIONS
The Nephrotic Syndrome Foundation strives to actively support research toward the search for a cure for Nephrotic Syndrome and it's underlying diseases, through collaboration with leading organizations in the field. We work actively to stay engaged and up to date on developments in Nephrotic Syndrome research, current clinical trials, and related studies. Partners in this effort include the following:
Founded by Dr. Deb Gipson at the University of Michigan, Kidney Research Network (KRN) engages all parties, including patients, researchers, and industry, to accelerate research associated with Nephrotic Syndrome and improve treatment.
​
ABOUT KRN
The Kidney Research Network is a collaborative organization of patients, clinicians, and scientists focused on improving evidence-based treatment options and outcomes for patients with kidney disease. Supported by a Patient Advisory Board, the Network consists of six cores and employs strategic partnerships to advance its mission. Learn More.
​
​The Sampson Lab’s mission is to lead and contribute to research that uncovers the genetic basis of Nephrotic Syndrome towards treatment and cures and to provide advocacy, education, and support to help improve the lives of those affected by this disease.
​
The Sampson Lab at Harvard / Boston Children's Hospital is made up of individuals from all over the United States and the world. In order to conduct their nephrotic syndrome genomic discovery research, they created the Biobank to Illuminate the Genomics of Kidney Diseases (BIGKiDs). They are seeking patients to support their mission to find better ways to detect, treat, and even cure Nephrotic Syndrome. Learn More.
​
Meet our Sampson Lab Partners!
​
CARA-FUENTES LAB AT NATIONWIDE CHILDREN'S
Dr. Gabriel Cara-Fuentes is a Pediatric Nephrologist at Nationwide Children's Hospital (Columbus, Ohio) whose research aims to identify the root of childhood Nephrotic Syndrome.
​
ABOUT CARA-FUENTES LAB
The lab goals are 1. to identify molecules in blood and/or urine that can help predict relapse of Proteinuria, changes in kidney function, and response to different therapies and 2. to discover novel therapies.
Our specific areas of interest include the role of the lungs and blood vessels in Nephrotic Syndrome. Our lab has recently identified molecules released by the lungs and blood vessels that may initiate the disease. This provides us the unique opportunity to search for specific therapies to help prevent proteinuria and kidney injury with novel and safer
medications.
​
​
Dr. Christine Sethna is a clinical researcher and the Division Director of Pediatric Nephrology at Cohen Children’s Medical Center. Her recent research has focused on cardiovascular outcomes in children with Nephrotic Syndrome. She, along with Dr. Kevin Meyers, is the lead researcher behind the Vagus Nerve Study, and is the recipient of multiple NIH grants supporting her ground-breaking work in this area. Learn more.
​
​Dr. Sethna’s Research Group is actively working on two studies relating to Glomerular Disease and Nephrotic Syndrome. The first uses Transcutaneous Vagus Nerve Stimulation for the treatment of Nephrotic Syndrome in Children, and the second is a nocturnal investigation into Glomerular disease, hypertension and transcriptomics. Both studies are currently enrolling pediatric patients diagnosed with Nephrotic Syndrome. To learn more about these studies, locations, and / or check eligibility, please see the informational study fliers (here) and / or please contact their study coordinator Kristal Wong (kwong27@northwell.edu).
​
​
Clinical research and patient support aren't separate tracks—they're two sides of the same mission. NSF and GlomCon partnership ensures families get both the latest treatment advances and the support to navigate daily life. We're building a stronger glomerular disease community where no family faces this journey alone.
​
ABOUT GLOMCON
The GlomCon Foundation is a mission-driven organization equipping nephrologists and care teams with the knowledge, tools, and community to improve outcomes for people living with glomerular and other rare kidney diseases.
​
Through this partnership, GlomCon and NSF will connect our networks and resources to create comprehensive support for the glomerular disease community: co-host educational programs, share resources across platforms, and connect physician expertise with family support initiatives.
​
When a family managing nephrotic syndrome needs help beyond what a nephrologist can provide in the clinic (financial support, emotional resources, community connection), there is now a source for them. GlomCon's network of Physicians can refer patients to NSF directly and confidently.
​
Opportunities for GlomCon Physicians include volunteering medical expertise at Camp NSF or participation in NSF's Medical Advisory Board.
​
You will see NSF featured in GlomCon newsletters, on their primary website, and patient education website, www.kidney-disease.org. Look for us as we partner on local community events, national conferences and shared collaborations to bring together people, information, research, care and community in support of those in this battle.​
