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World Orphan Drug Congress USA 2019 & World Alliance of Pituitary Organizations (WAPO)

Washington, DC & Lyon, France Spring, 2019 Two scientific conferences in Spring 2019 on opposite sides of the Atlantic showcased promising scientific breakthroughs and tools for Cushing’s and adrenal insufficiency (AI) patients.  Teams pitched four drugs under development designed to assist Cushing’s and AI patients at The World Orphan Drug Congress USA 2019 in Washington,Continue Reading

The 2019 CSRF Cushing’s Patient Journey Summit: Defining the “New Normal”

Leslie Edwin Everything about this event was special.  The agenda was created by a steering committee of 36 patients, and the conversations about the agenda formed the basis for a 140-question survey that went out to membership via e-mail between January and the beginning of February 2020.  After our last national conference in 2017, thereContinue Reading

CSRF Represented at the Pituitary Congress and Endo 2017

Late March and early April was a busy and exciting time for the CSRF! From March 29 -31, 2017, President Louise Pace, John Gulielmetti and Karen Campbell attended the Pituitary Congress. We had a display table outside the meeting room and our newsletters were well received. The Pituitary Congress gathers top notch physicians and researchersContinue Reading

Collaboration is Key: WAPO Summit

Collaboration – between patient organizations and between patients, medical professionals, and others – was the theme of the 2nd annual Summit of the World Alliance of Pituitary Organizations (WAPO) held this past May in Amsterdam. When we share our knowledge and experience, everyone benefits. I attended to represent CSRF, which is a founding member. InContinue Reading

Summary of 2016 Barrow Pituitary Center Patient Education Day

On Saturday, May 14, 2016 the Barrow Pituitary Center, in Phoenix, AZ, held a patient education day. A number of CSRF members from Southern California and the Phoenix area joined Dawn Herring and Karen Campbell at the event. The meeting of about 125 patients was very informative, as was the opportunity to talk with otherContinue Reading


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