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!
Other Support Resources
- Living with FSGS and NS – https://www.facebook.com/groups/366135126743166/
- FSGS Fight Club for Adults-https://www.facebook.com/groups/FSGSfightclubforadults/
- Nephrotic Syndrome in Adulthood- https://www.facebook.com/groups/454099794645940/
- Parents of Children with Nephrotic Syndrome – https://www.facebook.com/groups/12886179658/
- Nephrotic Syndrome in Kids – https://www.facebook.com/groups/1380027928908119/
- FSGS Fight Club for Parents of children with FSGS and NS – https://www.facebook.com/groups/194765020620959/
- Kidney Strong – https://www.facebook.com/groups/459938557484438/