Vasculitis Foundation Needs Help Reaching Goals in 2022

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by Mary Chapman |

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Winding up its 35th year, the U.S.-based Vasculitis Foundation (VF) is making its annual call for support for its programs and initiatives, which aim to help existing and future vasculitis patients. Key among them is to train more clinicians for treating ANCA-associated vasculitis (AAV).

Calling itself the world’s leading vasculitis organization, the nonprofit advocates for early diagnoses, better treatments, and better life quality for patients. The foundation aims to support, inspire, and empower patients and their families through a broad range of educational, research, clinical, and awareness initiatives.

AAV is a group of autoimmune diseases characterized by inflammation and damage to small blood vessels. The disorder affects about 1 in 50,000 individuals.

“With your support, we can train more vasculitis fellows, which will provide patients greater access to physicians, better treatments, and easier participation in clinical trials,” the foundation states on the webpage where donations may be made.

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“Our Vasculitis Patient-Powered Research Network (VPPRN) will conduct more research and build greater understanding of the disease. And for those struggling to find a doctor well versed in vasculitis, we are working toward the goal of every patient having a vasculitis expert within 50 miles of their home,” the foundation stated.

A partnership between the foundation and the Vasculitis Clinical Research Consortium, the VPPRN is an international research network of patients, scientists, clinicians, advocates, and family members who, through high-level clinical research, work to improve healthcare and patients’ quality of life. Since its 2014 inception, the network has enrolled more than 3,000 “patient partners” in 17 studies that cover 18 types of vasculitis.

The VPPRN maintains an online research registry of patients with all forms of vasculitis, which provides clinical data about their condition.

“In 2021, the collective strength and generosity of our community contributed to the expansion of educational programs, training a new generation of physicians, and supporting patient-centered research,” the foundation said in its December e-news e-mail. “With 2022 on the horizon, we have set our goals even higher, guided by this critical question: What do patients with vasculitis need?”

Those answers, the organization said, include more healthcare providers who understand how to diagnose and care for vasculitis patients, better access to medical centers that specialize in the disease, and more vasculitis research that includes patients’ perspectives.

Donations to the organization will, for one thing, help it train more physicians through its fellowship program. The Vasculitis Clinical Research Consortium–VF Fellowship is a mentored training program of up to two years for physician-investigators who have a strong interest in vasculitis.

Kevin Byram, MD, co-director of the Vanderbilt University Vasculitis Clinic, said on the announcement page that the fellowship was “instrumental” in helping him establish that center of excellence in Tennessee.

“We have organized an outstanding multidisciplinary group of providers who are interested in and have expertise in the management of patients with systemic vasculitis,” Byram said.

Contributions also will, through the development of more vasculitis centers, bring expertise closer to patients, and will heighten patient-centered studies through increased enrollment in the organization’s VPPRN.

Other initiatives, such as educational videos and podcasts, webinars and virtual support groups, will also benefit from the donations.

“Reaching our goals is determined by your generosity in 2021,” the foundation said in the e-mail. “Will you help us achieve our goals in 2022?”