Our Voice of Patient (VOP) Volunteers are storytellers, committed to sharing their journey, experiences and opinions with constituents such as pharmaceutical companies, researchers and even the FDA. They do so in various ways including, but not limited to, participating in interviews, joining patient committees, and even serving on patient panels.
We value our Voice of Patient Volunteers because they:
- Provide a wealth of knowledge, and first hand experiences
- Are located all across the world
- Can share what has worked and what hasn’t
- Wish to help research and clinical trials succeed and be more patient focused
Our VOP program is designed to connect individual patients or caregivers with constituents looking to learn and better understand what it is like living with glomerular disease. This gives our VOP volunteers the chance to share their story and help shape clinical trials to be more patient centric.
Criteria for Voice of Patient Volunteers:
- Diagnosed with or Caretaker of someone with FSGS or a disease causing NS for at least 2 years
- Knowledgeable about their or their loved ones disease
- Have access to email
- Reliable and responsive
- Able to communicate well with others and with NKI
- Willing to share detailed information about their health condition
- Experience with clinical trial is not required, but helpful
- Attend a web based training
If you meet the above criteria and are interested in helping other patients, click here to sign up to be a support volunteer.