Physicians, specialists, patients and families touched by vasculitis nationwide and around the world gathered June 23 at the Vasculitis Foundation’s 2017 International Vasculitis Symposium in Chicago.
“Physicians and patients around the world have been looking to us for education and support for more than 30 years,” executive director Joyce Kullman said in a press release. “While we offer that and more on a daily basis at the Vasculitis Foundation, our symposiums provide patients, their families, members of the medical community and others with the opportunity to meet in person, share information and build supportive relationships.”
At the conference, attendees were updated on research advances funded by the Vasculitis Foundation, as well as news from the Vasculitis Patient-Powered Research Network (V-PPRN). They also got to interact with many special guests, including:
- Divi Cornec, a Vasculitis Foundation-funded researcher at the Mayo Clinic working to establish a vasculitis clinic. Corner updated his audience on a project that focuses on the role of B-cells in vasculitis.
- Jennifer Rodrigues, a Vasculitis Foundation fellow at McMaster University who discussed an upcoming study, VERITAS, that will evaluate the effects of remission maintenance therapies on relapse and side effects.
- Marinka Twilt of the University of Calgary, who led a session on pediatric vasculitis for younger patients and their families. An expert on central nervous system (CNS) vasculitis, Twilt is one of the lead investigators for Brainworks, an international registry for pediatric patients with CNS vasculitis and inflammatory brain disease.
Overall, sessions focused on different types of vasculitis, caregiving, nutrition, fertility, pain management and mindfulness. Smaller breakout sessions also addressed the impact of vasculitis on different organs in the body, including the kidneys, nerves and skin as well as eyes, ears and sinuses.
The Vasculitis Foundation also partnered with the Northwestern University to provide a continuing medical education course June 24 in Chicago. The course gave medical professionals a chance to learn from several experts on diagnosis, treatments and research efforts on vasculitis.
Guests included Dr. Peter A. Merkel (University of Pennsylvania); Dr. Ulrich Specks (Mayo Clinic); Dr. Sharon Chung (University of California San Francisco); Dr. Peter Grayson (National Institute of Arthritis and Musculoskeletal and Skin Diseases) and Dr. Tanaz Kermani (University of California Los Angeles).
Antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV), or simply vasculitis, is a family of rare, potentially life-threatening diseases linked by blood vessel inflammation and a malfunctioning immune system. Three types of AAV exist: granulomatosis with polyangiitis (Wegener’s), microscopic polyangiitis and eosinophilic granulomatosis with polyangiitis.
Clinical signs may vary, and affect several organs. Skin lesions such as purpura or urticaria result when blood from small vessels leaks under the skin. The underlying cause of AAV remains uncertain, but treatment usually includes cyclophosphamide and other autoimmune drugs.
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