Wegener's Disease Resources - Vasculitis Foundation

The Vasculitis Foundation was established in 1986 to alleviate the isolation that patients and their families experience when these life-threatening diseases affect them. They say that new and improved treatments and a greater understanding of vasculitis have increased the life expectancy for patients and also improved their quality of life.  They also understand that for many patients, vasculitis becomes a chronic illness, requiring constant and careful management by the patient and his/her medical team.

Transient

The Vasculitis Foundation is an international  organization for patients with vasculitis, including Wegener's Granulomatosis, their families, friends and the health care professionals who care for them. The Vasculitis Foundation advocates for early diagnosis and leading edge treatment for all patients, no matter where they live.

In addition, the Vasculitis Foundation partners with researchers around the world to determine the cause and discover the cure for vasculitis.

The organisation is based in Kansas City in the USA, but does engage with vasculitis sufferers worldwide. They seem particularly good at employing social media to increase awareness of vasculitis in general including an active Youtube channel.

 Patients and families also shared their experiences through their Vasculitis Stories Project. This year they asked “What does living with vasculitis mean to you?” The responses were thoughtful and wide-ranging, proving that vasculitis impacts everyone in its own way. 

Through their chapters and support groups they offer their members the opportunity to meet in-person to learn about vasculitis and share their stories.