- To provide information and support for Cushing’s Disease and Cushing’s Syndrome patients and their families
- To increase awareness in the medical community and the general public about Cushing’s Disease and Cushing’s Syndrome
- To be a resource for information and support to health care professionals
Further, the CSRF works to educate and support patients, caregivers, clinicians, and all relevant stakeholders on and through all aspects of the Cushing’s journey. We aim to be a collective voice for the changes we need to see based on our experiences as experts of our own conditions. We are compelled to act because average diagnosis time remains too long, treatment options are not easy or optimal, and patients frequently suffer from inadequate post-treatment care, to great detriment. CSRF is an all-volunteer 501c3 non-profit organization, supported by a Medical Advisory Board, with approximately 3,000 members and counting.
The Cushing’s Support and Research Foundation was founded in 1995 to provide information and support to Cushing’s patients and their families. The Foundation was incorporated in the state of Massachusetts as a non-profit, 501(c)3 organization and has a Medical Advisory Board consisting of very experienced surgeons and endocrinologists who are world renowned for their expertise on Cushing’s. The CSRF is primarily funded by grants, sponsorships, and personal donations.
Cushing’s syndrome and Cushing’s disease are caused by the excess production of the steroid hormone, cortisol. These relatively rare disorders can be physically and emotionally devastating to the patient. Most patients endure years of symptoms prior to obtaining a diagnosis and recovery often requires a substantial period of time. Patients can gain insight and support through conversations with other patients. Two major objectives of the CSRF are to put patients in contact with other patients and to facilitate the sharing of information between members. These are partially accomplished through the CSRF newsletter and the CSRF website.
Our newsletter includes:
- New information on Cushing’s, including articles written by doctors
- Quality of Life topics
- Personal stories
- Answers to patients’ questions
- CSRF activities
Cushing’s is a medical disorder where patients can benefit from expert medical care and information. One of the CSRF’s objectives is to provide the best medical information from the best available sources. For this reason, we have established a Medical Advisory Board. The Board is composed of highly experienced surgeons and endocrinologists, many who are active in Cushing’s research and world-renowned. These doctors generously donate their time and resources to provide up-to-date information on Cushing’s.
Another objective of the foundation is to increase the awareness of Cushing’s in the medical community. By doing so, perhaps the time required to obtain a diagnosis can be decreased. Each year, the CSRF exhibits, networks, gathers news, and distributes resources on Cushing’s at medical conferences such as these:
- Endocrine Society
- American Association of Clinical Endocrinologists
- Pituitary Society
- World Association of Pituitary Organizations
- European Society for Endocrinoloy
- American Association of Diabetes Educators
- National Organization for Rare Disorders
Cushing’s is a disorder that affects physical, emotional and cognitive realms of a patient’s life. Cushing’s is a difficult disorder for family members to understand and for patients to cope with, thus patients often feel alone. Recovery is often slow and patients and families can benefit from support from others who have walked their steps before them. For this reason, patient and family support is paramount. The CSRF strives to create programs that eliminate some of the isolation and put patients in touch with others who have experienced Cushing’s. Let us know how we can help!
The Cushing’s Support and Research Foundation is a 501 (c) 3 non-profit organization incorporated in the state of Massachusetts to provide support and information to those interested in Cushing’s. This Web Site is for informational purposes only, and does not replace the need for individual consultations with a physician. CSRF does not engage in the practice of medicine, endorse any particular commercial products, doctors, surgeons, medications, treatment, or techniques. The opinions expressed on this web site are those of the individual author and do not necessarily reflect the views of individual officers, doctors, members, or health care providers.