What Vasculitis Foundation does

The Vasculitis Foundation, founded in 1986 and headquartered in Kansas City, Missouri, is a U.S. 501(c)(3) nonprofit that supports and empowers patients affected by vasculitis — a group of rare autoimmune diseases involving inflammation of blood vessels — along with their families, caregivers, and treating clinicians. It serves as both an advocacy body and a patient-powered research infrastructure provider, offering free educational content covering 20+ vasculitis types, a Find a Doctor directory, online support groups, and an annual Vasculitis Awareness Month campaign. The organization's international footprint includes a biennial symposium, multilingual resources (English, Spanish, Italian, Portuguese, Turkish), and a model partnership with the newly founded Vasculitis Society in India.

The foundation's core technology is a portfolio of patient-powered research products rather than a single platform. It operates the VPPRN (Vasculitis Patient-Powered Research Network) and PedsVPPRN pediatric registry for adult and pediatric vasculitis research, the VPREG pregnancy registry tracking outcomes in women with vasculitis, and a Community Dashboard surface for study participants. Programs are built and maintained in collaboration with the Vasculitis Clinical Research Consortium (VCRC), the American College of Rheumatology (ACR), NORD (National Organization for Rare Disorders), the Autoimmune Association, and academic medical centers including Duke, Northwestern, UCSF, Massachusetts General Hospital, Vanderbilt, University of Michigan, UNC, and UPMC. The VCRC-VF Fellowship Program trains the next generation of vasculitis specialists, while the V-RED Award recognizes clinicians who achieve timely diagnosis.

The foundation is funded through individual donations, memorial and honorary gifts, recurring giving, planned/legacy gifts, community fundraising, and corporate sponsorships including from Amgen (which markets TAVNEOS / avacopan for ANCA-associated vasculitis via its ChemoCentryx acquisition). All patient-facing programs, education, and resources are provided free of charge; there is no commercial product or subscription pricing. Staffing is lean at 1–10 employees, and the organization holds the Candid (GuideStar) Platinum Transparency seal. It carries no parent company, has no subsidiaries, and has not undertaken any merger, acquisition, or restructuring activity disclosed in the source material.

Name

Vasculitis Foundation

Legal name

Vasculitis Foundation

Website

https://vasculitisfoundation.org

Company type

Private

Founded year

1986

Operating status

Operating

Headcount range

1–10 employees

Short description

The Vasculitis Foundation, founded in 1986 in Kansas City, is a U.S. nonprofit supporting patients with rare autoimmune vasculitis through free education, patient-powered research registries, specialist directories, fellowship training, and a biennial international symposium serving patients, families, and clinicians.

Ownership category

akta.pro rank

Product category

Patient Advocacy & Rare Disease Support

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Rare Disease & Special Needs Support Organizations (BPAGACAM), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Patient advocacy services
• Rare disease education
• Vasculitis research support
• Patient support networks
• Nonprofit health organization

Headquarters

HQ city

Kansas City

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Fundraising: The foundation relies heavily on donations from individuals, memorial and honorary gifts, recurring gifts, matching gifts, and hosted fundraisers
2. Planned Giving: Legacy giving programs including bequests and planned gifts
3. Sponsorships: Corporate sponsorships from pharmaceutical companies like Amgen

Distribution channels5 records

Marketing channels7 records

Core offering

The Vasculitis Foundation is a nonprofit organization that delivers free patient education, peer support, specialist-finding tools, and research participation programs for individuals affected by vasculitis. Its core offerings include patient-powered research registries (VPPRN, PedsVPPRN, VPREG), a Find a Doctor Directory, treatment guidelines developed with the American College of Rheumatology, fellowship training for clinicians, an international symposium, and facilitated online support groups.

Product overview

The Vasculitis Foundation is a nonprofit organization offering a comprehensive suite of patient-focused programs and resources for individuals affected by vasculitis. The core offerings include the VPPRN Patient-Powered Research Network and PedsVPPRN Pediatric Registry, which enable patient participation in research; the Find a Doctor Directory for locating specialists; the Vasculitis Pregnancy Registry (VPREG) for reproductive health research; and the International Vasculitis Symposium for education and networking. Additional programs include the VF Fellowship Program for researcher training, V-RED Award Program recognizing diagnostic excellence, V-BOLD initiative combining research outcomes, online support groups, educational video library, and ACR/VF Treatment Guidelines developed with the American College of Rheumatology. The organization provides patient stories through its Community Voices program. The Vasculitis Foundation operates primarily as an educational and support organization rather than a technology product company.

Differentiator

Problem solved

Functional benefit

Brands

• VPPRN (Vasculitis Patient-Powered Research Network): Patient-powered research network dedicated to vasculitis research
• VCRC-VF Fellowship Program
• V-Red Award
• Vasculitis Voices
• V-BOLD (Vasculitis-Building Outcomes, Leading Discoveries)
• V-PREG Pregnancy Registry
• PedsVPPRN (Pediatric Vasculitis Research Registry)

Products and services

• Find a Doctor Directory An online directory tool that enables vasculitis patients to locate trusted vasculitis care specialists wherever they live, with search functionality for facilities and providers.
• VPPRN Patient-Powered Research Network A patient-powered research network enabling vasculitis patients to participate in research studies, contribute data, and access community dashboards for various vasculitis conditions.
• Vasculitis Pregnancy Registry (VPREG) A research registry focused on pregnancy outcomes for women with vasculitis, available in multiple languages including English, Spanish, Italian, Portuguese, and Turkish.
• Pediatric Vasculitis Research Registry (PedsVPPRN) A dedicated registry for pediatric vasculitis patients to contribute to research and advance understanding of vasculitis in children.
• International Vasculitis Symposium A biennial symposium bringing together patients, family members, and vasculitis experts for learning and networking opportunities.
• VF Fellowship Program A fellowship program supporting training and development of vasculitis researchers through the Vasculitis Clinical Research Consortium.
• ACR/VF Treatment Guidelines Clinically-developed treatment guidelines for vasculitis produced in partnership with the American College of Rheumatology.
• V-RED Award Program The Recognizing Excellence in Diagnostics award program honoring healthcare professionals who achieve accurate and timely vasculitis diagnoses.
• Online Support Groups Facilitated online support group meetings for people with vasculitis and their families, led by trained facilitators and VF staff.
• V-BOLD Initiative Vasculitis-Building Outcomes, Leading Discoveries - an initiative combining VF's research, patient engagement, and clinical outcomes programs.
• Community Voices A patient storytelling program featuring narratives from vasculitis patients about their diagnosis, treatment, and recovery journeys.

Quantifiable outcome

• 300 patients supported across India through Vasculitis Society partnership
• +1 more outcomes

Named customers5 records

Segments5 records

Ideal customer profiles5 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature5 records

Partnerships

Seven partnerships are on record, tiered core and minor.

• Vasculitis Society (India)coreStrategic or Co-development Partner · 1 February 2024Founded by Pooja Goyal in February 2024 following her son Ketan Goyal's death from vasculitis. The organization has partnered with major hospitals in India and supports 300 patients across the country. VF's international reach and support model has inspired similar organizations.
• AmgenminorStrategic or Co-development PartnerAmgen is listed as a sponsor for VF events. The company acquired ChemoCentryx which developed TAVNEOS (avacopan) for ANCA-associated vasculitis treatment. VF has provided information about TAVNEOS to its community.
• Autoimmune AssociationminorStrategic or Co-development PartnerAutoimmune Association logo appears on VF website as a partner organization, indicating collaborative relationship in the autoimmune disease space.
• NORD (National Organization for Rare Disorders)minorStrategic or Co-development PartnerVF is a member of NORD, the National Organization for Rare Disorders, supporting rare disease advocacy and awareness.
• Vasculitis Clinical Research Consortium (VCRC)coreStrategic or Co-development PartnerVCRC-VF Fellowship Program trains future vasculitis researchers and specialists. The consortium supports clinical research and trains vasculitis specialists through a dedicated fellowship program.
• American College of Rheumatology (ACR)coreStrategic or Co-development PartnerVF collaborates with ACR on treatment guidelines for vasculitis, including ANCA-associated vasculitis (GPA/MPA/EGPA), Giant Cell Arteritis, Takayasu Arteritis, Kawasaki Disease, and Polyarteritis Nodosa.
• Major Hospitals and Medical CenterscoreImplementation/ SI/ Consulting PartnerVF partners with leading medical institutions including Duke University, Northwestern, Vanderbilt, UCSF, Massachusetts General Hospital, University of Michigan, UNC, UPMC, and others to advance vasculitis care and research.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Lupus Foundation of America: Disease-specific 501(c)(3) nonprofit supporting patients with lupus, another autoimmune/rheumatologic condition; runs education, support groups, research grants, and advocacy — directly comparable model to VF's focus on vasculitis.
• Scleroderma Foundation: Disease-specific nonprofit supporting patients with scleroderma, a rare autoimmune connective tissue disease; very similar operating model — patient education, support, research funding, and specialist pipeline programs.
• The Myositis Association: Disease-specific nonprofit for myositis patients and families; similar small-staff model, patient education, research support, and online community — a close operating-model analog in the rare autoimmune space.
• Pulmonary Fibrosis Foundation: Disease-specific nonprofit focused on pulmonary fibrosis, a rare lung disease with similar patient journey challenges (delayed diagnosis, specialist scarcity); comparable fundraising, education, and research support model.

Broad incumbents

• Arthritis Foundation: Large US nonprofit covering 100+ types of arthritis and related rheumatic diseases (including vasculitis-adjacent conditions); offers research funding, patient education, and advocacy at significantly greater scale than VF.
• National Organization for Rare Disorders (NORD): Umbrella rare disease nonprofit and VF's listed member organization; offers advocacy, research grants, and patient resources across 7,000+ rare diseases including vasculitis.
• Crohn's & Colitis Foundation: Large, well-established disease-specific nonprofit for IBD; ~40+ years old, runs patient-powered research networks (similar to VPPRN), fellowships, and Find a Doctor-style resources — a mature reference model for VF's trajectory.

Emerging players

• Autoimmune Association (formerly AARDA): Umbrella advocacy organization for autoimmune diseases including vasculitis; explicitly listed as a VF partner and offers overlapping education/advocacy, while VF leads on disease-specific depth.

Regional players

• Vasculitis UK: United Kingdom-based patient organization serving vasculitis patients; directly serves VF's disease area but in a different geography — strong peer for international patient support operations.

Others

• American Kidney Fund: Major US nonprofit providing financial assistance, education, and research for kidney disease — relevant as vasculitis frequently involves kidney damage, creating overlapping patient populations and partnership potential.

Market position

Strengths4 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/user/vasculitisfoundation
• Facebookfacebook.com/VasculitisFoundation
• LinkedInlinkedin.com/company/vasculitis-foundation
• Instagraminstagram.com/vasculitisfoundation
• Xx.com/vasculitisfound

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Vasculitis Foundation