Media Contact: Joyce Kullman, Executive Director
PO Box 28660
Kansas City, MO 64188
Toll Free: 800.277.9474
About the Vasculitis Foundation
Based in the United States, the Vasculitis Foundation is the international organization for patients with vasculitis and their family members and friends. 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 the cure for all types of vasculitis.
The VF’s members are in 58 countries and belong to chapters and support groups worldwide. The foundation also partners with other volunteer groups in Australia, Canada, Denmark, France, Germany, Ireland, Italy, Northern Ireland, the Netherlands, Scotland, Sweden, and the United Kingdom to increase awareness and knowledge of vasculitis.
The foundation 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.
What Is Vasculitis?
Vasculitis (vas-kyu-LI-tis) is a condition that involves inflammation in the blood vessels. The condition occurs if your immune system attacks your blood vessels by mistake. This may happen as the result of an infection, a medicine, or another disease or condition.
“Inflammation” refers to the body’s response to injury, including injury to the blood vessels. Inflammation may involve pain, redness, warmth, swelling, and loss of function in the affected tissues.
In vasculitis, inflammation can lead to serious problems. Complications depend on which blood vessels, organs, or other body systems are affected.
Early diagnosis and effective treatment are critical for patients with vasculitis. There is no known cause of vasculitis…no known cure.
The forms of vasculitis include:
- Behcet’s Disease
- Central Nervous System
- Eosinophilic Granulomatosis with Polyangiitis (Churg Strauss Syndrome)
- Giant Cell Arteritis (Temporal Arteritis)
- Granulomatosis with Polyangiitis (formerly Wegener’s Granulomatosis)
- Hypersensitivity Vasculitis (Leukocytoclastic)
- IgA Vasculitis (Henoch-Schönlein Purpura)
- Microscopic Polyangiitis
- Polyarteritis Nodosa
- Polymyalgia Rheumatica
- Rheumatoid Vasculitis
- Takayasu’s Arteritis
Vasculitis is difficult to diagnose and is often misdiagnosed due to its rarity and scant research, delaying treatment and proper disease management. Oftentimes, it is the resulting damage that finally leads doctors to a proper diagnosis. Since many, if not most, patients do not receive a timely diagnosis, they can suffer permanent organ and tissue damage or even death. Once diagnosed, it can be difficult for vasculitis patients to find medical experts.
New and Improved Treatments
Thankfully, new and improved treatments and a greater understanding of vasculitis have increased the life expectancy for patients and also improved their quality of life. For many patients, vasculitis becomes a chronic illness, requiring constant and careful management by the patient and his/her medical team.
The lives of adults and children with vasculitis are irreversibly and dramatically changed by the disease. A 2010 survey of vasculitis patients and caregivers, found that 28 percent of patients are on disability due to vasculitis and 26 percent needed to change their work capacity to accommodate their illness. Additionally, 25 percent of family members surveyed reported the death of a loved one due to vasculitis.
Patient Support Activities and Programs
The VF organizes and funds regional and international symposia where patients connect with other patients and learn about the latest therapies and treatments. It also promotes and supports the activities of 70 chapters and support groups worldwide. Similarly, the Foundation keeps patients up to date on the latest research and medical news through its website, newsletter, and online through its Facebook support group and page. These activities help alleviate the isolation that patients and their families experience when these life-threatening diseases affect them.
Raising Awareness of Vasculitis
To help raise awareness of vasculitis in the worldwide medical community, the VF partners with recognized vasculitis authorities and experienced clinicians and researchers representing many of the world’s finest medical institutions. These consultants work with the Foundation on opportunities to teach and present information about vasculitis at national and international medical conferences. In addition, they often provide guidance and advice to the Foundation’s Board of Directors and staff on developing strategy, setting goals, improving processes and adding new services.
The VF provides educational materials, raises awareness and understanding of vasculitis in the general public and medical community. During Vasculitis Awareness Month in May of each year, advocates from across the world work together putting a face to the disease. Activities held throughout the month include: walks, picnics, fundraising events, educational meetings, advocating with local government officials, and simply passing out brochures and information about vasculitis.
How the Foundation Supports Research
Research funding is a priority for the Vasculitis Foundation. The VF Research Program, established in 2001, is the largest private funder of vasculitis and has funded over $1.3 million in research worldwide.
The Foundation’s Scientific Advisory Board consists of world-renowned vasculitis experts and is responsible for overseeing the VF Research Program. The board reviews submitted applications for completeness and content consistent with the Foundation’s stated research goals. The VF collaborates with researchers around the world to fund the most promising studies. Recent medical advances have turned many types of vasculitis from universally fatal diseases into chronic diseases.
Click here to learn more about the studies being funded by the Vasculitis Foundation.
Educating the Next Generation in Vasculitis
The Vasculitis Foundation is committed to creating greater awareness and interest in vasculitis. The Fellowship Program, established in 2012, encourages medical professionals to pursue careers in patient care and research linked to vasculitis.
The VF Fellowship provides the opportunity for one- or two- year tracks designed to support the training of physician scientists who wish to gain clinical expertise in vasculitis and who may also wish to pursue an investigational career in this field. The fellowship is conducted through Vasculitis Centers where there has been a track record of training individuals in vasculitis.
The VF is currently funding two fellowships: Dr. Rennie Rhee at the University of Pennsylvania and Dr. Medha Soowamber at the University of Toronto.
Donating to the Vasculitis Foundation
The VF is a registered 501(c)(3) non-profit organization.
Click here to learn more about donating to the Vasculitis Foundation.