Scleroderma Research Foundation to Host Live Webinar on Diagnosis and Management of Scleroderma: A Rare Autoimmune Disease
Expert from the Largest Scleroderma Specialty Center in the U.S. at Johns Hopkins will Provide Insight to Help Patients, Physicians and Caregivers.
Source Newsroom: Scleroderma Research Foundation
Newswise — SAN FRANCISCO, Calif., August 14, 2014/Newswise—Dr. Francisco Boin of the Scleroderma Center at The Johns Hopkins University School of Medicine, one of the largest scleroderma specialty clinics in the world, will host a live, free webinar on Thursday, August 21, 2014 at 1:00 p.m. EDT. The webinar is presented by the Scleroderma Research Foundation (SRF), America’s leading nonprofit investor in medical research aimed it improved therapies and a cure.
“Diagnosis and Early Management of Scleroderma” will educate a broad audience on the diagnosis and importance of early management of scleroderma. The session is intended for patients, both newly diagnosed and those living with the disease for many years, as well as caregivers—both inside and out of the healthcare community.
Dr. Boin is a physician-scientist interested in research studies that apply basic research technology directly to study patients’ clinical disease (translational research). His focus is on the cellular biology of immune cells and the mechanisms of autoimmunity in scleroderma with a goal of identifying reliable laboratory tools that can help investigate the causes of scleroderma, effectively measure disease activity, monitor treatments and help predict clinical outcomes in patients living with the disease.
“We hear far too often that patients do not have access to the tools and information to help them better manage their care,” says Amy Hewitt, SRF Executive Director. She adds, “With our webinar series, we are trying to bridge that gap by providing access to the experts.”
Dr. Boin’s webinar is the 15th in an ongoing educational series available live or post-broadcast on the Foundation’s website at www.sclerodermaRESEARCH.org. The series is free and made possible by generous support from Gilead Sciences and United Therapeutics.
Register online at: http://www.srfcure.org/for-patients/webinars
Thursday, August 21, 2014 at 1:00 p.m. EDT.
The word scleroderma means hard skin, but the disease is much more—often affecting the internal organs with life-threatening consequences. Scleroderma is considered a rare autoimmune disease and has one of the highest mortality rates of the rheumatic diseases. Women comprise 80% of the patient population with typical onset between the ages of 30 and 50. Scleroderma is characterized by widespread vascular abnormalities, immune dysregulation and fibrotic complications affecting multiple organs including the skin and lung. The disease is not contagious or directly hereditary and scientists are still searching for possible causes. There is no known cure and current therapies address various symptoms rather than truly arresting disease progression.
About The Scleroderma Research Foundation:
The Scleroderma Research Foundation is America’s leading nonprofit investor in scleroderma research. It was founded in San Francisco in 1987 by scleroderma patient Sharon Monsky who lost her battle to the disease in 2002. Monsky’s legacy lives on through the organization, chaired by Luke Evnin, Ph.D., a scleroderma patient and managing partner of MPM Capital, a dedicated investor in life sciences.
The Foundation’s collaborative approach is guided by a world-class Scientific Advisory Board and is empowering scientists from leading institutions to work together to develop an understanding of how scleroderma begins, how it progresses and what can be done to slow, halt or reverse the disease process.
About The Johns Hopkins Scleroderma Center:
The Johns Hopkins Scleroderma Center specializes in the care of patients with scleroderma and related conditions such as Raynaud’s phenomenon, localized scleroderma and pulmonary arterial hypertension. The Center’s mission is to provide excellent clinical care while seeking to better understand the causes and best treatment approaches for scleroderma. All physicians at the Center are actively involved in clinical or translational research, looking for ways to expedite discoveries in the laboratory and apply them to new and better treatments for scleroderma patients.