When a patient learns they have a rare disease, sometimes after years of misdiagnosis or being told “we don’t know what’s wrong,” they often feel relief thinking they can now begin the path to healing. But that is when the real horror begins – with some diseases such as sarcoidosis, there is often no clear path to healing; and sometimes no chance of healing at all. This devastating situation is common for hundreds of thousands of sarcoidosis patients across the world. What can save these patients, many of whom face debilitating futures and even premature deaths? Frankly – there are very few answers for treatment let alone a cure: Doctors don’t know, researchers don’t know, and certainly patients don’t know.
The Foundation for Sarcoidosis Research (FSR) makes it our mission to find answers – we know too many patients and surviving family members who are desperate for improved treatments, research, faster diagnoses, and for hope. FSR has a very strategic and expert-driven response to these needs. We seek to de-risk the sarcoidosis space so that more research and more therapies can emerge, successfully moving the needle forward to help these patients.
FSR is the nation’s leading nonprofit organization dedicated to finding a cure for this disease and to improving care for sarcoidosis patients. Since its establishment in 2000, FSR has fostered over $5 million in domestic and international research efforts and has worked diligently to provide resources to thousands.
Our refined approach includes a specific research agenda that identifies and addresses the major gaps in sarcoidosis research. These are key components missing in the field which, if produced, would be transformational toward advancing research to help patients. FSR facilitates game-changing advances in sarcoidosis research, resulting in promising therapies that can move quickly from the laboratory to the patient. By providing education, advocacy, resources, direct funding, and collaborations, FSR counters the suffering of patients, and advances the potential for a cure.
Mission statements can sometimes be ethereal, therefore it can be difficult to assess the direct impact for stakeholders. How is the hard work FSR staff and volunteers are doing on a day-to-day basis accelerating research? How is that work living up to our mission and meeting the needs of patients, clinicians, and investigators?
Learn more about how FSR’s efforts are addressing their real-life needs.