Cystinosis Families Please Complete Cystinosis Patient Survey
As a rare disease, cystinosis and the needs of its community have largely been overlooked. As a person with cystinosis or parent of a child with cystinosis, you know firsthand the challenges that come with the diagnosis.
For this reason, the Cystinosis Research Network (CRN) has developed The Cystinosis Patient Survey. The survey is designed to help the CRN and its partner companies learn more about important areas affecting the cystinosis community, including your experience with cystinosis, use of cysteamine eye drops and the type of resources and support most meaningful to people touched by this disease.
By completing this brief questionnaire, you are helping make a difference for the cystinosis patient community. Only with this information can we ensure that people affected by this condition are getting access to the right tools and resources, that’s why we hope you will take a minute to complete this important survey.
Please complete the questionnaire by July 28, 2010. To access the survey, visit www.surveymonkey.com/s/T5FWX7G. All of your personal and contact information will remain confidential.
In addition to completing the survey, we hope you’ll help by sharing the above link with other cystinosis patients or parents of a child with cystinosis, or by posting it on their Facebook page.
Thank you in advance for your support. If you have any questions about the survey, please contact Kelly Butterworth at 202.591.4052 or [email protected].
President and Executive Director
The Cystinosis Patient Survey is made possible by support from Sigma-Tau Pharmaceuticals.
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