Cushing’s Support & Research Foundation

CSRF celebrates 30 years of patient advocacy in 2025, and as 2026 becomes not that far away on the calendar, we have significant initiatives that will begin to roll out and immediately impact the way people learn about cortisol disorders and find the support and information they need to make the incredibly difficult decisions faced by all Cushing's and hypercortisolism patients.  A few highlights:

1. The Patient's Guide to Cushing's and Hypercortisolism: This is one of the most needed resources that the Cushing's community is virtually unanimous about having.  We've got the experts (patients!) engaged in a decision-making process about the content, and it will get a thorough review by members of a professional board and committee to ensure that this becomes a resource shared in as many clinics, hospitals, telehealth teams, and doctors' offices as possible.  We will offer physical copies and digital access at no cost to anyone through educational grant funding, and a "Phase II" will involve adaptations and translations so that it can be shared with international care teams and advocacy groups.

2. The Global Cushing's Patient Registry: There is a significant lack of alignment between patients and physicians about the perception of care and experience of this disease.  There are some innovative data collection platforms in existence that go deeper than clinical data, and we are inspired to know that  many agree that the "missing link" to having a better understanding of the impact of this disease is patient-centered data curated and produced by the patients themselves.  Phase II will include pediatric studies.

3. Bespoke Telehealth Protocols: Working with our telehealth partner, we are designing a protocol for cortisol screening that will enable patients in any state to get an appointment faster, use their insurance, and know that they will not experience any delay, alternative diagnosis, or incomplete work up.  Our patient team will collaborate with some of the best physicians in the space to create an intake form and specific steps to the initial screening and follow up.  Physicians can refer to this service to get the workup done when a new patient makes an appointment but can't be seen for months in their practice.  The Adrenal Insufficiency community is likely going to join this effort to build a protocol for those who need to get screened for adrenal insufficiency without similar delays.

Please come chat with us at our booth, or email us!  We'd love to hear from you.