Vasculitis Foundation

Nonprofit profile at a glance

EIN
431492959
IRS 990 coverage
2009–2024
Forms available
Form 990 2024
Location
Kansas City, MO, USA
Phone
8164368211
Rating
74
Verdict
SUPPORTED
Rating confidence
Moderate

Official website

Reported finances

Revenue
$2,508,810
Expenses
$2,383,106
Assets
$6,087,497
Liabilities
$146,118

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

14 people listed

Executive titles in this filing

  • KEVIN BYRAM MD (PRESIDENT)

Highest reported compensation

  • JOYCE A KULLMAN (EXECUTIVE DI): $149,468 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

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.

What it reported doing in 2024

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. In 2024-25, vf funded 10 grants totalling 246,907. 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.

Operating model

Revenue model
Donor-supported. 89% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 84% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 60
  • Transparency & Controls: 77
  • Accountability: 95
  • Sustainability: 59
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 63%; rating input score 63
  • Program expense ratio: 63.9%; rating input score 64
  • Fundraising efficiency: $9.24 raised per $1 spent on fundraising; rating input score 35; 35th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 72nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 5%; rating input score 51; 51st percentile among comparable filings
  • Total-asset coverage ratio: 2.55; rating input score 69; 69th percentile among comparable filings
  • Liabilities to assets ratio: 0.02; rating input score 79; 79th percentile among comparable filings
  • Officer compensation ratio: 6.3%; rating input score 45; 45th percentile among comparable filings

Growth

  • Program expense growth: 4.9% per year; rating input score 100; 39th percentile among comparable filings
  • Revenue growth: 11.2% per year; rating input score 100; 72nd percentile among comparable filings
  • Asset growth: 14.4% per year; rating input score 100; 73rd percentile among comparable filings

Details

  • Where the money goes: 63% of revenue deployed · 63.9% of spending went to programs
  • Governance: 12 of 12 board members independent · 7 of 8 filing controls reported
  • Programs: 2 filed program accomplishments · $1.5M in reported program spending
  • Leadership: top reported pay $149K · 14 people listed
  • Consistency: 38 of 38 current checks pass
  • Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 14 filing years from 2009 to 2024
  • Contacts: How to reach this organization
  • Money network: 7 filed money-flow records
  • Related organizations: 6 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight: 7 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 35/100.
  • Review — Sustainability: Operating margin scored 51/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • Moderate — Sustainability: Officer compensation ratio scored 45/100.