Question: How do I find an endocrine surgeon to do an adrenalectomy and how many procedures should they have done? Answer: You can find an endocrine surgeon by checking the American Association of Endocrine Surgeons website at www.endocrinesurgery.org. This website has a great deal of information about all types of endocrine-related diseases. In general,… Continue Reading
Author Archives: kkc
An Update on Medications Used to Treat Cushing’s
For the majority of individuals with Cushing’s syndrome (CS), surgery directed at the pituitary or adrenal glands is the first and most important treatment; however, many patients do not have a sustained remission after surgery. As a result, treatment options other than surgery are needed for many patients with CS. Until recently, the use of… Continue Reading
2nd Annual Global Pituitary Patient Advocacy Meeting – Zurich, Switzerland
Have you ever felt like the only person in the whole world with a pituitary disorder? Well, you’re not, as we were all reminded at the 2nd Annual Global Pituitary Patient Advocacy Meeting held in Zurich, Switzerland, September 20-21st, 2013. I was honored to be among 18 representatives of organizations supporting patients with Cushing’s and… Continue Reading
CSRF Recognized at Global Genes Rare Disease Project Patient Advocacy Summit
On September 20, 2013, my husband, John, and I attended the Global Genes Rare Disease Project Patient Advocacy Summit in Newport Beach, CA. In attendance were over 150 rare disease advocates, patients and community members as well as over 300 people registered for the live webstream of the event. The Summit offered practical advice, case… Continue Reading
CSRF Updates Website and Logo
The CSRF has just launched this new website that you are viewing and along with that, we’ve updated our look! This includes a brand new logo and an updated print newsletter format. Out with the old! In with the new! Thanks to an unrestricted educational grant from Corcept Therapeutics, we have this new website up… Continue Reading
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