28 Jul Patient Priorities for Research
ASF is taking steps to better incorporate the patient perspective into our research goals. To better understand the daily and long-term impact that Alport syndrome has on patients and the main concerns patients have about the disease and its progression, we have created a survey.
If you are a patient and/or the parent of a patient, please take a few moments to complete this survey.
Your feedback is essential to providing researchers leading the charge to find treatments and cures for Alport syndrome with the perspective of the patient community.
To continue this process, a survey will also be sent to researchers and experts in Alport syndrome. A committee of patients and expert researchers will then meet to identify goals for ASF’s research program based on feedback from both groups. These goals will be included in ASF’s 2017 request for research proposals and will be considered during the evaluation process.
Please let me know if you have any questions. Thank you in advance for your support of this important step forward to conquer Alport syndrome.
Gina A. Parziale, CFRE
Alport syndrome Foundation
** This was originally shared via email.