rFSGS Conference

Purpose

To convene a one-day conference—an in-person gathering of patients, families, doctors, researchers, funders, and political leaders—to raise awareness of recurrent focal segmental glomerulosclerosis (rFSGS) and to encourage sharing information, research, patient stories, and data, with the ultimate goal of identifying and facilitating funding, resources, and research specifically dedicated to rFSGS.

Meeting Objectives

To convene a diverse group of rFSGS patients and their families, doctors, researchers, political leaders, and funders
To gather patient stories and experiences
To meet and hear from doctors and researchers regarding rFSGS and new opportunities for collaboration and investigation
To identify and encourage political support, research grants, and other funding mechanisms and contributions toward the science and cure of rFSGS
To identify those in the medical and scientific professions who can further assist in the research advancements and cure for rFSGS
To engage the U.S Food and Drug Administration, National Institutes of Health, and any other agencies that could assist in fostering and supporting research and development for rFSGS

Background

Focal segmental glomerulosclerosis (FSGS) is a rare kidney disease that results in kidney failure and, in most cases, requires dialysis or transplantation. Recurrent FSGS (rFSGS) represents an even rarer subset of disease and is characterized by the recurrence of FSGS within the first few weeks post-transplant. Almost 40 percent of all rFSGS cases in patients who required a transplant occur in the new kidney. When rFSGS occurs in the new kidney, treatment options are limited. rFSGS currently has no cure. Obtaining adequate funding support for research or drug development for rFSGS through public and private funding structures is very difficult. This rare orphan disease significantly impacts the lives of patients and their families, presenting an unmet need for allocating funding to help understand the causes of rFSGS and find a cure. Both children and adults with rFSGS are affected in how they feel, function, and survive. A team of dedicated doctors, scientists, and researchers is prepared and motivated to dedicate time and effort to finding a cure—but financial assistance is needed to make effective treatment a reality.

Organizers

Simone Sanna Cherchi, M.D., Columbia University, New York, NY

Gary Torgow, Sterling Group, Detroit, MI

Elie Torgow, Sterling Group, Detroit, MI

Program Directors

Alessia Fornoni, M.D., Ph.D., Miami Miller School of Medicine, Miami, FL

Simone Sanna Cherchi, M.D., Columbia University, New York, NY

Scientific Committee

Rasheed Gbadegesin, M.D., M.B.B.S.	Duke University School of Medicine
Donald W. Landry, M.D., Ph.D.	Columbia University
Umberto Maggiore, M.D.	University Hospital of Parma
Sumit Mohan, M.D.	Columbia University Mailman School of Public Health
Giovanni Montini, M.D.	University of Milan
Opeyemi Olabisi, M.D., Ph.D.	Duke University School of Medicine
Kimberly J. Reidy, M.D.	Albert Einstein College of Medicine
Michelle Rheault, M.D.	University of Minnesota Medical School
Eloise Salmon, M.D.	University of Michigan
Matthew Sampson, M.D., M.S.	Boston Children’s Hospital
Patricia L. Weng, M.D.	University of California Los Angeles David Geffen School of Medicine

Registration Deadline

November 9, 2024

Contacts

Logistics Contact

Danielle Johnikin
The Scientific Consulting Group, Inc.
T: 301-670-4990

Program Contact

Simone Sanna Cherchi, M.D.
Columbia University
T: 646-422-9463
ss2517@cumc.columbia.edu

Gary Torgow
Sterling Group
T: 313-268-8880
garyt@sgdetroit.com

Elie Torgow
Sterling Group
T: 248-515-1439
eliet@sgdetroit.com
Father of an rFSGS patient