Global Cushing’s Quality of Life Survey by CSRF – Invitation to participate

The Cushing’s Support and Research Foundation (CSRF) and the World Alliance of Pituitary Organizations (WAPO) 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. Findings will be reported at the World Alliance of Pituitary Organizations Summit in Buenos Aires, Argentina on October 7, 2023. Afterwards, a detailed report will be shared with all participating individuals and organizations, and there will be additional opportunities to share over the next year at conferences.

Your voice matters, and we are grateful for your time and input.  To learn more about this project and to take the survey yourself, please visit http://www.csrf.net/2023globalsurvey. The survey is available in English, French, and Spanish.  The survey opens on Monday, August 28, and will remain open until midnight EST on September 11 for this specific collection of data to present.
Afterwards, the survey will be open again.

Learn more about
CSRF at http://www.csrf.net and
WAPO at http://www.wapo.org

WAPO celebrates 50 Member Organizations

At the official start in 2016, WAPO had it’s first meeting with 16 pituitary patient organizations, focusing on acromegaly, Cushing’s and adrenal disease organizations. Since January 2023 WAPO is focussing on a broader scope of pituitary – endocrine disorders.
Now, June 2023, we have welcomed our 50st member organization, a new milestone!

Webinar on ‘Hypercortisolism’ by Dr Blevins Jr

April 27, 2023: ‘Depression and the pituitary patient: support for them and yourself’ by Linda Rio (Marriage & Family Therapist (MFT)

May 25, 2023: ‘Health Technology Assessment‘ by Realise Advocates