Peer support is important to NephCure, because we feel that patients and caregivers connecting with others and sharing lived experiences is an integral, complimentary part of coping with Nephrotic Syndrome and FSGS. In addition to our online support forum Nephspace, we offer our Patient Connections program aimed at creating community support through one on one connections via email and phone.
Our Patient Connections program consists of a world wide organized network of patients and caretakers whose lives have been affected by Focal Segmental Glomerulosclerosis (FSGS) and the diseases causing Nephrotic Syndrome. This program is designed to connect individuals via email or phone based upon any or all of the following: specific geographical area, diagnosis, symptoms, complications, or age of individuals. Our support volunteers are committed to offering support and sharing their experiences with others who are facing similar challenges associated with NS or FSGS.
Click here for more information about our Patient Connections program and to receive support!
Online Support Groups
Peer Connections Adult Support Group
Join other adult patients who suffer from protein spilling kidney diseases to discuss various topics, ask questions, and connect with each-other bi-monthly on the 2nd and 4th Thursdays of each month at 8:00 PM EDT.
To register for our next support group visit our events page
Dialysis and Transplant Support Group
Join us for an informal time to connect with other patient families dealing with end stage renal disease, dialysis and/or transplant due to rare protein spilling kidney diseases on the 3rd Tuesday of each month at 8 PM Eastern.
To register for our next Parents’ Place, visit our events page
NephCure Teens is a monthly virtual support gathering just for teens, ages 13-17, with protein spilling kidney disease! Join NephCure’s own Savannah Dauster, to discuss relevant topics around navigating life with kidney disease.
For information on our next gathering, visit our events page
Disease specific, college age, and tweens support groups!
Other Support Resources
- FSGS Fight Club for Adults
- Minimal Change Disease, FSGS and Rare Kidney Disease in Adults
- IgA Nephropathy
- Membranous Nephropathy Talk
- C3G/DDD Warriors
- MPGN Support and Information