Hello, Bonjour, Hola!
The Cushing’s Support and Research Foundation (CSRF) and the World Alliance of Pituitary Organizations (WAPO – wapo.org) are conducting a global survey to gather patient opinions about quality of life and the journey with Cushing’s. We understand that living with Cushing’s poses numerous challenges, and we deeply appreciate your willingness to share your experiences.
If you are 18 years of age or older and have been diagnosed with Cushing’s, you qualify to participate in this project. If you do not currently fit this criteria, we will have additional opportunities in the future.
By participating in this survey, you are contributing to a collective effort that aims to enhance understanding, promote better care, and improve the lives of individuals affected by this condition worldwide. We will first report our findings at the World Alliance of Pituitary Organizations Summit in Buenos Aires, Argentina on October 6, 2023. Afterwards, a detailed report will be shared with all participating individuals and organizations, and there will be additional opportunities to share our story over the next year at conferences.
Your voice matters, and we are grateful for your time and input. The survey opens on Monday, August 28, and will remain open until midnight EST on September 15.
August 28: Launch survey, to end September 15
September 1-9: Reminders sent out
September 16-30: Analysis of survey results, create presentation
October 7: Present at WAPO Summit, Buenos Aires
October-November: Create report and distribute to all participants
IF YOU HAVE QUESTIONS, PLEASE REACH OUT:
GRETCHEN JORDAN, PROJECT ADMINISTRATOR: [email protected]
LESLIE EDWIN, CSRF PRESIDENT: [email protected]