Patient Support Volunteers

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. Our Patient Support Volunteers are committed to offering support and sharing their experiences with others who are facing similar challenges associated with Nephrotic Syndrome or FSGS.

Volunteer Opportunities
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You Are Valued!

We value our Patient Support Volunteers because they:

  • 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 and coping with Nephrotic Syndrome and FSGS

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. This gives volunteers the chance to help other patients using their experience in roles that they feel most comfortable with.

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What We Are Looking For

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
  • Reliable and responsive
  • Able to communicate well with others and with NKI
  • Empathetic, yet empowering
  • Culturally sensitive and understanding
  • Someone others can relate to, identify with and learn from
  • Have a general understanding of FSGS/NS
  • Willing to complete an short application and share your story
  • Attend a web based training

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