Based in the United States, the Vasculitis Foundation is the only international organization for patients with vasculitis. 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 a cure. The Vasculitis 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.
The Vasculitis Foundation 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 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 through social media. These activities help alleviate the isolation that patients and their families experience when these life-threatening diseases affect them.
To help raise awareness of vasculitis in the worldwide medical community, the Foundation partners with recognized vasculitis authorities and experienced clinicians and researchers representing many of the worldâ€™s finest medical institutions. These consultants work with the Vasculitis Foundation on opportunities to teach and present information about vasculitis at national and international medical conferences.
The Vasculitis Foundation 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.
Research funding is a priority for the Vasculitis Foundation. In fact, the Vasculitis Foundation Research Program, established in 2001, is the largest private funder of vasculitis. The Vasculitis Foundation 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.
The Vasculitis Foundation 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 will be conducted through Vasculitis Centers where there has been a track record of training individuals in vasculitis.
What new functionality we are looking for
The Vasculitis Foundation website would like to adopt contemporary strategies to incorporate Internet tools, such as electronic communication, blogs, lists, calendars, social media, etc. to encourage people to join and participate in VF activities and to financially support the organization.
One of our critical needs is to have a more efficient and elegant mobile presence. We must present our complex educational information in a format for people who are only accessing our website via a small mobile device such as a cell phone or iPad (as opposed to a laptop or desktop computer).
The website needs to better integrate our WordPress website with our Salesforce CRM much more effectively. VF supporters host multiple awareness and fundraising events worldwide (everything from bowling rallies to golf tournaments) and we need to be able to manage our event management and event registration. We want to use the system to provide user registration and contact management, and payment collection through the website.
With a more interactive website, we could connect patients worldwide with our physicians and researchers to advance better treatment and more extensive research.
How the new functionality will help
In addition to changes stated above, a new website would help us further our mission by connecting patients with researchers. This would encourage patients to participate in research. Effective research requires large patient cohorts to gather enough data to make definitive conclusions. Our patient population is very small (less than 200,000 in the United States) and they live all over the world; we need to more efficiently connect with patients to draw them into research efforts. We cannot answer the questions about what causes vasculitis, how to better treat it, how to cure it, without the patients' participation in research.
As the definitive resource for vasculitis patients around the world, the VF website is our voice and the strongest resource available to patients living with this rare disease.
How our organization will use the technology
Who will use the technology
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