CSRF Represented at NORD Breakthrough Summit

In October 2016, Leslie Edwin attended the National Organization for Rare Disorder’s (NORD) Rare Diseases & Orphan Products Breakthrough Summit in Washington, D.C. She was joined by D.C. Support Group members Eugenia and Amy, plus Amy’s service dog, Sam. At least a dozen people now know about Cushing’s thanks to Sam – he was quiteContinue Reading

Meet Some of the CSRF Volunteers

As most of you are probably aware, for many years I answered email on a daily basis and handled all aspects of the CSRF newsletter. As the CSRF has grown over the years, email volume continued to rise and the newsletter became a 24 page document; it was clear that the CSRF needed more helpContinue Reading

Volunteer Help Wanted

The CSRF is excited to announce the formation of several committees to further reach our goals! If you, a family member, or friend are willing to volunteer for one of the below listed committees, please CONTACT US.Public Awareness Committee More public awareness is needed for Cushing’s. In the beginning, this committee will be responsible forContinue Reading

CSRF Reaches Out in Seattle

Over 700 endocrinologists and other medical professionals from all over the world spent an unusually sunny long weekend in Seattle this September, attending the Endocrine Society’s Clinical Endocrinology Update. This meeting focused on medical professionals who practice endocrinology in a clinical setting, working directly with patients.  Several CSRF Medical Advisory Board members presented.  Dr. LaurenceContinue Reading

Presiden’t Message: Cushing’s Disease: An Often Misdiagnosed and Not So Rare Disorder

Hi All,I have some very exciting news to share. After working with Cushing’s patients for over 20 years, I can honestly say that there is still much to be done in spreading awareness among medical professionals about this disease. Cushing’s patients are still waiting 5-10 years before they are diagnosed. Thus, it has been myContinue Reading

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