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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

Summary of the Cushing’s Quality of Life Webinar, 2017

On May 6, 2017, Dawn Herring, LMFT, a survivor of Cushing’s, a licensed marriage and family therapist with twenty years’ experience providing trauma therapy and counseling to US marines, presented a quality of life webinar. Dawn started by quoting Mother Teresa – “To keep a lamp burning, we have to keep adding oil.” After doctorsContinue 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

Cushing’s Patient Education Day 2017

The Cushing’s Support and Research Foundation held a Cushing’s Patient Education Day on Saturday, October 21, 2017. browser does not support iframe If you would like to view an agenda for the 2017 meeting, please click here. If you would like to read a summary of the 2014 Patient Education Day, click here. This meetingContinue Reading