Left to right Kevin G. Dsouza, M.D.; Ishan Lalani, M.D., MPH; Joseph B. Barney, M.D.; Maria del Pilar Acosta Lara, M.D.; Kelli Montz, BSN, RN; Lanier O'Hare, Ph.D.
The University of Alabama at Birmingham’s Multidisciplinary Sarcoidosis Clinic has joined the Foundation for Sarcoidosis Research (FSR) as a founding member in their Global Sarcoidosis Alliance (GSA). This new network of specialty clinics in the United States and globally creates a robust network for patient and clinician education, innovates sharing of information to advance new therapies for treatment of sarcoidosis, and creates collaborative referral networks to connect patients with complex sarcoidosis with specialists familiar with their disease. Sarcoidosis is an inflammatory disease characterized by the formation of granulomas in one or more organs of the body.
When left unchecked, chronic inflammation caused by granulomas can lead to fibrosis. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure.
Disease presentation and severity varies widely among patients. In some cases, the disease goes away on its own. In others, the disease may not progress clinically but individuals will still suffer from some symptoms that challenge their quality of life. The rest of patients—up to a third of people diagnosed with the disease—will require long-term treatment. It’s estimated that the prevalence of sarcoidosis in the US ranges between 150,000 and 200,000 (Baughman, RP et al), with an estimated 1.2 million individuals with sarcoidosis worldwide (Denning, DW et al.). The FSR Global Sarcoidosis Clinic Alliance brings together sarcoidosis clinics and hospitals committed to finding a cure and offering evidence-based, patient-centric care for those living with sarcoidosis. Alliance members will benefit from innovative resources, sustainable programming, and tools to accelerate treatment, research and the continuum of patient care.
“FSR believes in the power of many to join forces for true game-changing results in sarcoidosis care and research. The FSR Global Sarcoidosis Clinic Alliance will ensure every patient in every community across the world has access to education, care, and support, leading to improved patient outcomes,” says Mary McGowan, FSR CEO. “The quality of life of approximately 1.2 million sarcoidosis patients impacted by sarcoidosis world-wide depends on a true global collaborative and that’s exactly what this Alliance is all about.” “We are excited to contribute to this new alliance and push the margin forward in understanding and eventually curing sarcoidosis for thousands of patients in Alabama and worldwide,” said Joseph Barney, M.D., professor in the UAB Division of Pulmonary, Allergy and Critical Care Medicine and director of UAB’s Multidisciplinary Sarcoidosis Clinic.
“We were initially motivated to join the alliance to foster collaboration between other providers from other clinics in the United States,” said Pilar Acosta Lara, M.D., a member of the UAB Multidisciplinary Sarcoidosis Clinic.
“Since joining the alliance, we have been fostering working collaborations with other clinics in the US,” Dr. Acosta Lara said. “Our patients share the same barriers as those in other alliance clinics - access to care, support care network geared towards patients, and access to clinical trials. This alliance will expand all of our efforts to improve the care of sarcoid patients”