Vasculitis Foundation
Navigating the Unknown - You are not alone
Programs and results
What we aim to solve
Vasculitis 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. Often patients go undiagnosed for years because the symptoms can mimic other diseases. At the Vasculitis Foundation, it isn’t enough to rest on what we have done, it is critical to our friends and family living with vasculitis to do more.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Support and Education
Knowledge is key to a patient understanding vasculitis. Through our website, e-news, conferences and webinars, 800 number and symposia the VF educates its members about the diseases. The educational materials provide the most current information on medications and medical procedures.
Awareness Program
Vasculitis Foundation (VF) members are encouraged to raise awareness of vasculitis and the VF year-round in their local communities. Members distribute information to medical offices, hospitals, health centers, pharmacies and libraries. Vasculitis Awareness Month is an international campaign celebrated in May and activities include Patient Heroes, V-RED, educational materials and fun activities for people of all ages to participate in. Events are organized by individuals, families and VF chapters.
Research and Fellowship Program
The VF Research and Fellowship Program was established in 2001 to encourage and support research into the cause(s), cure and treatment of vasculitis. We have funded 29 Fellows, 32 countries, 75 studies, and $3,000,000 .
Where we work
Affiliations & memberships
National Organization for Rare Disorders - Member 2000
National Organization for Rare Disorders - Member 2007
National Organization for Rare Disorders - Member 2008
National Organization for Rare Disorders - Member 2009
National Organization for Rare Disorders - Member 2010
National Organization for Rare Disorders - Member 2012
National Organization for Rare Disorders - Member 2013
National Organization for Rare Disorders - Member 2014
National Organization for Rare Disorders - Member 2015
National Organization for Rare Disorders - Member 2016
National Organization for Rare Disorders - Member 2017
National Organization for Rare Disorders - Member 2018
National Organization for Rare Disorders - Member 2019
National Organization for Rare Disorders - Member 2020
National Organization for Rare Disorders - Member 2021
American Autoimmune Related Diseases Association 2021
Autoimmune Association - Member 2022
National Organization for Rare Disease - Member 2022
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Total dollars received in contributions
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
Total revenue for fiscal years ending June 20, 2020, June 30, 2021; and June 30, 2022.
Number of online groups served
This metric is no longer tracked.Totals By Year
Related Program
Support and Education
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
The Vasculitis Foundation implemented Patient Support Group Meetings to connect people living with vasculitis virtually. This metric is the number of meetings held monthly.
Number of conference attendees
This metric is no longer tracked.Totals By Year
Related Program
Support and Education
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
The number of attendees for virtual and in-person conferences.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Over the next three years, our efforts will focus on early diagnosis, better treatments and longer, better lives for friends and family living with vasculitis. Knowledge is power, and we are constantly seeking new and effective methods for reaching both the patient and medical community. The more each person learns, the more empowered they are to make decisions. In the coming year, we will focus on the first step— helping physicians recognize vasculitis as early as possible.
What are the organization's key strategies for making this happen?
No one will argue that getting diagnosed early allows for treatment to start before the damage is too far along. Here is one approach the VF is developing.
The American College of Rheumatology (ACR)/ Vasculitis Foundation (VF) Treatment Guidelines. The organizations hope the guidelines will help providers better understand and treat the various forms of vasculitis. As much as the guidelines highlight what evidence-based knowledge exists for the treatment and management of vasculitis, they also shine a light on what work needs to be done. The VF will use multiple approaches to get the guidelines in the hands of healthcare providers.
Educational materials and website provides access to learning tools about each type of vasculitis. Disseminating information at regional conferences and a biennial symposium brings patients and providers together to discuss key topics relating to a patient's journey.
What are the organization's capabilities for doing this?
The Vasculitis Foundation is recognized as the leading international provider of information on the disease and resources to help patients find knowledgeable physicians and support. As a partner in the Vasculitis Clinical Research Consortium (VCRC) we have funded five fellowships and participated in the development of 12+ vasculitis centers across the country and internationally.
We will launch a new website at the end of 2023 with updated materials on the 20 different forms of vasculitis. We are sharing all our updated medical information with vasculitis centers and physicians around the world for translation into French, Spanish, Mandarin, and Japanese languages. We believe this will enable patients around the world to have access to the most current information on diagnosis, treatments, and techniques to manage the disease. The new website will feature videos of physicians.
What have they accomplished so far and what's next?
Over the past 15 years, the VF Research Program has funded over $2,000,000 in scientific studies to better understand the disease and its mechanisms. Our Vasculitis Patient-Powered Research Network (V-PPRN) has over 2,500 patients participating in online surveys and questionnaires to gather long-term data on patient's individual journeys and experiences.
The VF website has 10,000 unique visitors each month seeking information on diagnosis, treatment, physicians, and support. Our 800-toll free line receives approximately 60 calls per month and our online Contact Us form averages over 4,000 requests annually.
Building on our achievements, we look forward to reducing the amount of time it takes to diagnose a patient, expanding the breadth of research in vasculitis, and continuing to improve supportive services for patients and caregivers.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback, We don’t have the right technology to collect and aggregate feedback efficiently
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Vasculitis Foundation
Board of directorsas of 02/28/2024
Kevin Byram, MD
Community volunteer
Term: 2023 - 2025
Jason Wadler
Community Volunteer
Don Nagle
Suzanne DePaolis
Victor James
Anisha Dua
Brian Goldman
Caz Cazanov
Jocelyn Ashford
Elizabeth Brant
Sara Baird Amodio
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
Equity strategies
Last updated: 08/03/2023GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- We use a vetting process to identify vendors and partners that share our commitment to race equity.
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.
- We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.