Patient Connections Support Program

Peer support is important to NephCure — we know that patients and caregivers connecting with others and sharing lived experiences is an integral part of coping with Nephrotic Syndrome and FSGS.

Our Patient Connections support program consists of an organized network of patients and caretakers whose lives have been affected by rare, protein-spilling kidney diseases. 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 these rare conditions.

Why offer a Patient Connections support program?

Patients and caretakers can:

• Find comfort in knowing they are not alone
• Benefit from talking with someone who has already been in similar situations
• Learn more about their condition from someone who is not using medical jargon
• Receive more one-on-one support than they might receive from their clinician during a short office visit
• Receive tips on managing both their emotional and physical care

Patient/Caretaker Support Volunteers:

• Provide a wealth of knowledge, awareness, and first-hand experiences
• Are located all across the world
• Have resources at their fingertips
• Wish to help others by sharing their experiences in living with and coping with Nephrotic Syndrome or FSGS

How does someone receive support?

• Be a patient or caretaker of a patient with Nephrotic Syndrome or FSGS
• Be willing to answer a few questions or fill out a short survey so NephCure staff can match you with the most beneficial advocate(s)
• Be willing to provide NephCure with a valid email address or phone number and fill out a Patient Support Request Form

Criteria for Patient Support Volunteers:

• Diagnosed with or caretaker of someone with FSGS or other disease causing Nephrotic Syndrome for at least 3 years
• Have access to email
• Be reliable and responsive
• Be able to communicate well with others and with NephCure
• Be empathetic, yet empowering
• Be culturally sensitive and understanding
• Be someone others can relate to, identify with, and learn from
• Have a general understanding of FSGS/NS
• Be willing to complete a short application and share your story
• Attend a web based training

Interested in becoming a Patient Support Volunteer?

Visit our Patient Support Volunteer page to learn more.