******The survey closes at the end of Tuesday 6th February.*******
The NKF needs your help.
As a result of the NKF’s C3G Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting last August, we are constructing a Patient Platform for C3G patients and their caregivers. This Platform will address needs identified at the EL-PFDD meeting and will consist of:
•An online patient community where patients and caregivers can communicate in real-time and anonymously about any C3G issue
•Age appropriate educational materials on C3G
•Webinars on C3G (e.g., clinical trials, etc.)
•Direct access to NKF patient services
•Lots more on living with C3G (e.g., resources, tool kits, etc.)
This Platform is for C3G patients and caregivers and WE NEED YOUR INPUT on what you would like included in the Platform.
The link below is to a survey where you can tell us what you want and need in the Platform. Please take the survey!
C3G Patient Platform Survey (for patients and caregivers):
When taking the survey, please read instructions carefully: You will be asked to rank your preferences on a 1 – 5 scale. Please note that 1 = you don’t want it; 5 = you really want it.
Thank you very much for taking the survey; you will be helping us to help the C3G community manage this disease. If you have any questions, please let me know.
David and C3G PATIENT PLATFORM STEERING COMMITTEE:
Shannon Aliff (C3G Caregiver)
Lindsey Fuller (C3G Patient and Caregiver)
Dave Yates (C3GPatient)