We’re looking to expand representation on our NephCure Kidney Network Patient Registry Steering Committee!
Are you interested in moving research forward? Looking for a way to give back in a meaningful way? Interested in connecting with others impacted by Nephrotic Syndrome?
The NephCure Kidney Network is a patient registry containing patient-reported information about living with Nephrotic Syndrome. The NKN is governed by patients, patient parents, patient advocates, clinicians, researchers and representatives from industry, all working together to advocate for patients and families. The group is also charged with ensuring that high quality data is being collected and utilized properly for the research community.
This group, known as the Steering Committee, meets regularly (via phone) to discuss patient recruitment and retention, research priorities, and other topics relevant to the success of the NKN. The collective perspective of the Steering Committee members helps maintain a patient-centric focus throughout all the NKN-initiated activities.
If you are interested, please contact;
Chelsey Fix at firstname.lastname@example.org or 610-540-0186 ext 19
Applications will be accepted until April 15th, 2016
Please consider the following criteria when applying:
- Nephrotic Syndrome patient, parent, or caregiver OR clinician that regularly interacts with NS patients OR researcher with strong interests in NS (from an academic institution or pharmaceutical industry)
- SC Members must be able to commit to a monthly conference call held on a weeknight. Occasionally, 2 calls may be held in the same month.
- SC Members must be able to use the technology associated with participating in a conference call
- Patient members must be enrolled in NKN Patient Registry
- SC Members must have an active email address and be willing to communicate via email regularly