Here you will find resources listed at the bottom of our various educational one-pagers; just scroll down until you find the link(s) you’re looking for.

Our website! 

You can navigate from this page, or reach the homepage in a new tab by clicking this link:  https://www.csrf.net

Email us! (put together the spelled out email address, sorry about that but trolls and bots have found the rare disease space)

Leslie Edwin, President – leslie at csf dot net

Gretchen Jordan, Associate Director – gretchen at csrf dot net

General Inbox, Checked Weekly – cushinfo at csrf dot net

Connect with other patients via our monthly Zoom Support Calls no matter where you are.

The current schedule is listed on the front page of our website so you can see when the next one will be.  You can let us know to send you a reminder and the call-in links for one or more future calls by indicating your preferences here.

UpToDate Page: Cushing’s Syndrome Treatment Beyond the Basics

UpToDate is a website intended “to help medical professionals make appropriate care decisions and drive better outcomes, UpToDate delivers evidence-based clinical decision support that is clear, actionable, and rich with real-world insights.”  Their page on Cushing’s Syndrome treatment is maintained by two of our most amazing Cushing’s community specialists and serves as an excellent resource for patients as well:

https://www.uptodate.com/contents/cushing-syndrome-treatment-beyond-the-basics

National Alliance for Caregiving – Rare Report

Access several resources here: https://www.caregiving.org/rare/

CSRF Member Quality of Life Survey Reports

Read more about it here: https://csrf.net/reportsandpresentations/

Adrenal Crisis Information

Cleveland Clinic’s detailed webpage about this condition: https://my.clevelandclinic.org/health/diseases/23948-adrenal-crisis

Glucocorticoid Withdrawal Syndrome Article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9170649/