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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

2019 Conferences

Spring brings pollen, baby birds, short sleeve shirts…and endocrine conferences!  We look forward to this time of year because it’s a chance to hear about new science and technology that have become available.  We share our resources and make new connections with doctors, nurses, researchers, and other stakeholders.  We then translate some of the mostContinue 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

Rare Disease Summit: A New Era of Patient Focused Innovation

By: Leslie Edwin and Amy Dahm Two delegates – Leslie Edwin, President, and Amy Dahm, “DC Correspondent” – represented the CSRF at the National Organization for Rare Disorders (NORD) Orphan Products Breakthrough Summit at the Marriott Wardman Park in Washington, DC October 14-16, 2018. Sam, Amy’s service dog, accompanied them to the conference and informationContinue Reading

CSRF Attends NORD Rare Diseases and Orphan Products Breakthrough Summit 2017 in Washington, D.C.

In October 2017 the National Organization for Rare Disorders (NORD) held their annual meeting to gather patient group representatives, the U.S. Food and Drug Administration (FDA), researchers, doctors, and others involved in the rare disease community.  NORD has been advocating for those with rare diseases for almost 35 years now; the organization began as aContinue Reading


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