Newswise — Over 300 people with autoimmune vasculitis, family members, and health care professionals from four countries came together at the 2017 International Vasculitis Symposium to share and learn about some of the latest research and clinical information in the field of autoimmune vasculitis. The event was held at the Marriott Chicago O'Hare in Chicago, Illinois.
The Symposium offered the unique opportunity for attendees to learn firsthand the most up-to-date news and information about vasculitis research, treatment and management.
“Many of our patients came to the symposium because it affords a wonderful opportunity to not only attend lectures led by vasculitis experts, but also a chance to talk with the presenters personally throughout the weekend,” says Joyce Kullman, Executive Director of the Vasculitis Foundation. “Access to these vasculitis experts can be very challenging for patients but our symposium promotes that exchange of information between doctor and patient.”
One of those vasculitis experts was Peter Grayson, MD, MSC, founder and principal investigator of the Translational Program in Vasculitis at the National Institute of Arthritis and Musculoskeletal and Skin Diseases in Bethesda, Maryland. Dr. Grayson said that from a doctor’s perspective the symposium gave him a chance to meet vasculitis patients—some of whom could potentially qualify for the ongoing vasculitis research studies.
“As a physician and a researcher, connecting with patients at the Symposium is a fantastic way to hear the concerns that matter most, to educate patients about their disease, and to share the latest research developments,” says Grayson. “The Vasculitis Foundation has fostered a strong sense of community among people affected by vasculitis, and the Symposium is a great forum where researchers and patients can create partnerships that will continue to advance our understanding of these diseases.”
According to Kullman, the 2017 Symposium received high praise from attendees who have a variety of needs and expectations to better understand and manage their rare disease. Tailoring the symposium to meet these needs was based on reviewing previous symposium surveys and patient comments.
“Last year during the planning for the event, we reviewed feedback from past symposia to understand what patients wanted to see in a future symposium. It was apparent that patients wanted to learn about the latest diagnostic, and treatment therapies because that directly impacts them,” explains Kullman. “Also, many attendees enjoy connecting with other patients who share their disease so they can educate and support one another.”
The VF also used the 2017 Symposium as a chance to capture many of these presentations on video so they could be made available to a wider audience through DVDs, or on the VF’s YouTube Education Channel.
According to the Cleveland Clinic, which has long been active in vasculitis research, the prevalence of specific types of vasculitis in the United States is about 3/100,000 population for granulomatosis with polyangiitis (Wegener's granulomatosis), 3/100,000 for polyarteritis nodosa, 26/100,000 for giant cell arteritis, and 1/100,000 for Takayasu arteritis. For just this small sample of selected vasculitides, the combined prevalence is over 30/100,000 population. About 100,000 Americans per year are hospitalized for care of vasculitis, and while its impact is most significant among patients and their families, it also impacts society through its effect on the U.S. workforce and health care system.
About the Vasculitis Foundation
The Vasculitis Foundation is the international advocacy organization for people with vasculitis. The VF empowers patients through disease education, raises awareness of vasculitis in the general public and medical community, and funds research to determine the cause, develop more effective treatments, and discover a cure. The VF is committed to improving the lives of current and future patients and is positioned as the definitive resource for patients, family members, medical professionals and researchers seeking information about vasculitis. For information about vasculitis and the Vasculitis Foundation, please visit www.vasculitisfoundation.org.