Vasculitis Foundation

“The by-laws were updated. The organization no longer has members.”

“The 990 is reviewed and approved by the organization's finance committee and then shared with the board of directors before filing with the irs.”

“Board of director members are required to complete a conflict of interest statement annually which is reviewed at the fall retreat.”

“Annual performance review and comparison to industry.”

“Governing documents are made available to the public upon written request.”

“Building upon the collective strength of the vasculitis community, the vasculitis foundation supports, inspires and empowers individuals with vasculitis and their families through a wide range of education, research, clinical, and awareness initiatives. Our vision is to be the leading organization in the world dedicated to diganosing, treating, and curing all forms of vasculitis.”

“Building upon the collective strength of the vasculitis community, the vasculitis foundation (vf) supports, inspires, and empowers individuals with vasculitis and their families through a wide range of education, research, clinical, and awareness initiatives. Our vision is to be the leading organization in the world dedicated to diagnosing, treating, and curing all forms of vasculitis. The vf provides support through its extensive website, montlhy e-newsletters, electronic and printed educational materials, phone and email outreach. Website visitors: 35,000 annually; youtube subscribers: 8,100 annually; monthly e-newsletter distribution: more than 13,000 subscribers; and 3,500 phone and email requests for assistance this year. The vf offers 10 virtual support group meetings monthly for patients of all ages and their parents and caregivers, attracting as many as 160 participants a month. The vf offers wide-ranging live and on-demand webinars and podcasts that address disease spotlights, mental health/wellness, research, therapies and treatments. The vf had 120+ webinars and podcasts with 7,020 hours watched, and 150,000+ views on vf's youtube education channel. The vf team has been on the road this year educating our patient community at regional and international conferences and increasing awareness in the medical community by exhibiting at medical conferences across the country.”

“Vasculitis - building outcomes, leading discoveries (v-bold) program combines research, fellowships, vasculitis centers, and the vpprn with the goal to improve the quality of life for patients with vasculitis, and ultimately find the cause(s) and cure for vasculitis. Research: the vf young investigator award provides one or two-year grants of up to 50,000 to support researchers within five years of the completion of their fellowships. The funding supports pilot studies in researching diagnosis, etiology/pathogenesis, epidemiology, and treatment/management. Fellowships: the vf partners with academic institutions and the vasculitis clinical research consortium (vcrc) to provide fellowships for physician- investigators who have a strong interest in vasculitis. This mentored training program emphasizes clinical, patient-oriented investigation. Vasculitis centers are essential in the patient journey - from diagnosis to treatment to remission, with the potential for cures. Vasculitis centers provide comprehensive, high-quality, and compassionate care to patients with vasculitis. In addition, they have the capacity to advance our understanding of vasculitis through research. With experts in the management and study of the disease, vasculitis centers are at the forefront of specialty care and clinical research, while treating all types of vasculitis.vasculitis patient-powered research network (vpprn) is the international research network of patients, scientists, clinicians, advocates and family members who work to improve the health care and quality of life for people with vasculitis through high-level clinical research. In 2023-24, vf funded six grants totalling 502,502. In 2023-24 the vf surveyed patients about their top concerns in treatment and found that an overwhelming number of patients were concerned about access to care. The vf brought together a wide range of vasculitis experts and health care professionals in a summit to engage in a thoughtful discussion about how to improve access to care for patients no matter where they live. The vf is developing next steps out of our survey findings and the priorities that came out of the summit.”