Cushing's Support & Research Foundation
@CSRFnet
Followers
369
Following
4
Media
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Supporting patients in all ways; direct peer contact, trustworthy science-supported resources, community events, access to patient voice research opportunities.
Worldwide; Homebase Atlanta GA
Joined October 2014
New post on CSRF: Sandra M. - Embrace the Journey
csrf.net
Hi, my name is Sandra, I am 34 years old, I am from Portugal and I am a nurse. What would I say to a person that just has been diagnosed with Cushings? “You are not alone” and “It will be a long...
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New post on CSRF: CSRF Interviews One of Its First Members: Neddy Zaleski
csrf.net
Leslie Edwin Neddy Zaleski joined CSRF in 1996 as one of the first official members when the organization was less than a year old. We conducted a mail outreach project early in 2020 to connect with...
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New post on CSRF: Cushing's and Blood Sugar - What's the Connection?
csrf.net
I am writing this article from two perspectives- as a Diabetes Care and Education Specialist (CDCES) and as a person who has successfully recovered, hopefully forever, from Cushing’s disease (pitui...
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New post on CSRF: Three Takes on the COVID-19 Pandemic
csrf.net
There has been a lot of research related to the pandemic’s effects on patient populations over the last year. Many journals temporarily bypassed lengthy review periods to get COVID data disseminated...
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New post on CSRF: Medications for Cushing's - Old and New: Part One in a Two-Part Series
csrf.net
The first line of treatment for endogenous Cushing’s (caused by a tumor inside the body) is surgery to remove the tumor. More often than not, though, the patient’s medical journey does not end there...
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We feel seen! Sharon Terry of Genetic Alliance goes hard for rare patients everywhere and makes the ENTIRE case for registries led by patient organizations.
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We are relieved and encouraged when we see efforts like this to educate and connect people to how Cushing's affects everything and everyone in our lives far beyond the clinical data captured in the office setting. @MedStoriesTV .
medicalstories.tv
Today Alyssa is back to her demanding athletic training and managing very well despite having Cushing’s Disease. Here is her story.
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Great information for patients facing transsphenoidal surgery by Drs. Raj Mukherjee and Nick Rowan (Johns Hopkins)
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In honor of Cushing's Awareness Day, a patient video from Recordati Rare Diseases.
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Today is Cushing's Awareness Day! Hug a Cushie, and help us work toward faster diagnosis, better prognosis, and kinder understanding.
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