Sjögren’s Foundation
The Sjögren's Foundation, founded in 1983 and based in Reston, Virginia, is the only national U.S. nonprofit dedicated to Sjögren's disease, serving patients, caregivers, and healthcare professionals through education, a 65+ support group network, clinical practice guidelines, research grants, and the Conquering Sjögren's newsletter, while raising over $5.3 million annually.
- Company typePrivate
- Founded1983
- HeadquartersVirginia, United States
- Headcount11–50
- GTM typeB2C
- OfferingServices
What Sjögren’s Foundation does
The Sjögren's Foundation, founded in 1983 and headquartered in Reston, Virginia, is the first and only national nonprofit health organization in the United States dedicated to Sjögren's disease — a systemic autoimmune condition affecting an estimated 4 million Americans. The organization operates a portfolio of patient-facing products and services: the bimonthly Conquering Sjögren's newsletter, an online Product Directory exclusive to members, downloadable educational brochures and resource sheets, a comprehensive medical glossary with 200+ terms, and Patient-to-Patient stories. It also serves healthcare professionals through Clinical Practice Guidelines (the first such guidelines ever published for Sjögren's), diagnostic criteria, the Sjögren's Quarterly journal, and research grants. The Foundation's core technology asset is its content library and clinical research data, not a software platform.
The Foundation's go-to-market is community-led and event-driven, anchored by 65+ in-person support groups across the US and Canada, an Inspire-hosted online patient community (with 120+ peer support volunteers and Ask the Expert sessions), the annual National Patient Conference, the Walk for Sjögren's series, April Awareness Month, and World Sjögren's Day (July 23). Its revenue model blends four streams: individual donations and charitable contributions (including memorial/honor gifts and corporate matching), an annual membership program, fundraising events (Walks, conferences), and Corporate Memberships from pharmaceutical and healthcare companies that fund research and clinical trials. The Foundation raised over $5.3 million in the last fiscal year and holds Charity Navigator Four Star rating, Candid Gold Transparency 2026, and National Health Council Standards of Excellence certification (2025). It successfully led the international effort to rename the disease from "Sjögren's Syndrome" to "Sjögren's Disease," with the consensus published in Nature Reviews Rheumatology in 2025, and reduced average diagnosis time from 6 years to 2.8 years through its 5-year breakthrough goal.
Sjögren’s Foundation firmographics
Firmographics- Name
- Sjögren’s Foundation
- Legal name
- Sjögren's Foundation, Inc.
- Website
- https://sjogrens.org
- Company type
- Private
- Founded year
- 1983
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- The Sjögren's Foundation, founded in 1983 and based in Reston, Virginia, is the only national U.S. nonprofit dedicated to Sjögren's disease, serving patients, caregivers, and healthcare professionals through education, a 65+ support group network, clinical practice guidelines, research grants, and the Conquering Sjögren's newsletter, while raising over $5.3 million annually.
- Ownership category
- akta.pro rank
Sjögren’s Foundation industry classification
Industry- Product category
- Patient Advocacy and Disease Support Services
- NAICS
- Voluntary Health Organizations (813212)
- SIC
- Services-Membership Organizations (8600), Services-Health Services (8000)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
Keywords
Where Sjögren’s Foundation is headquartered
LocationHeadquarters
- HQ city
- Virginia
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Sjögren’s Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Charitable Contributions: The Foundation raises funds through individual donations, corporate matching programs, and memorial/honor gifts. The website provides a donation portal at 4agc.com.
- Membership Program: Annual membership provides newsletter subscriptions, product directory access, clinical trial updates, event discounts, and member-exclusive resources.
- Events and Walks: Record-Breaking 2026 Spring Walk for Sjögren's Season and other fundraising events generate donations and community engagement.
- Corporate Memberships and Partnerships: Pharmaceutical and healthcare companies support the Foundation through corporate membership and sponsorship programs, including funding clinical trials.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Subscription | Annual | Annual membership with bi-monthly newsletter, product directory, and event discounts |
Go-to-market motion2 records
Distribution channels6 records
Marketing channels10 records
Sjögren’s Foundation product offering
Product offeringCore offering
The Sjögren's Foundation is a 501(c)(3) nonprofit patient advocacy organization that provides disease education, patient support services, clinical practice guidelines, research funding, and community programs for individuals affected by Sjögren's disease. It operates the largest U.S. network of support groups and serves as the only national nonprofit exclusively focused on Sjögren's, supporting an estimated 4 million Americans with the condition.
Product overview
The Sjögren's Foundation operates as a nonprofit patient advocacy organization rather than a commercial product company. Its service portfolio centers on patient education, support, and research advancement. The core offerings include the Conquering Sjögren's bimonthly newsletter and an online Product Directory (both exclusive to members), along with Clinical Practice Guidelines for healthcare providers. The Foundation also conducts and publishes the Living with Sjögren's Patient Survey research, provides downloadable brochures and resource sheets, and facilitates community support through Patient-to-Patient Stories, the Inspire online patient community, and a network of over 65 in-person support groups across the U.S. and Canada. Additional resources include a comprehensive medical glossary, diagnostic criteria resources, and clinical trial information. These services work together to support patients from diagnosis through ongoing disease management.
Differentiator
Problem solved
Functional benefit
Products and services
- Sjögren's Foundation Annual Membership
- Clinical Practice Guidelines
- Sjögren's Quarterly
- Foundation National Patient Conference
- Walk for Sjögren's Events
Quantifiable outcome
- Reduced diagnosis time from 6 years to 2.8 years (50% reduction)
- +4 more outcomes
Companies that use Sjögren’s Foundation
Customer profileNamed customers5 records
Segments4 records
Ideal customer profiles3 records
Sjögren’s Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Sjögren’s Foundation partnerships and signals
Strategic signalPartnerships
Three partnerships are on record, tiered major and core.
- InspiremajorPartnership with Inspire, a leading provider of online health communities since 2006, to provide the Sjögren's Patient Support Community. Inspire hosts over 250 health communities and enables Ask the Expert sessions where Sjögren's experts engage with patients to answer questions on topics including general management, oral, ocular, and neurological symptoms.
- Corporate Members (Pharmaceutical and Healthcare Companies)coreCorporate membership program where pharmaceutical and healthcare companies support the Foundation's mission and in return gain association with the leading Sjögren's organization. Corporate members sponsor clinical trials and provide funding for research initiatives. The Foundation maintains a list of Clinical Trials Sponsored by Corporate Members on its website.
- Harris PollmajorThe Harris Poll conducted the 2025 Living with Sjögren's patient survey on behalf of the Foundation, gathering insights from 6,360 respondents on the variety and severity of symptoms and quality of life impact. The survey received IRB approval before launch.
Scale indicators6 records
Recent moves7 records
Expansion highlights6 records
Sjögren’s Foundation competitors and assessment
Company assessmentDirect peers
- American Autoimmune Related Diseases Association (AARDA): National umbrella advocacy organization for autoimmune diseases including Sjögren's. Highly comparable in mission, advocacy posture, and reliance on a small staff to convene research and policy initiatives across a fragmented disease landscape.
- Crohn's & Colitis Foundation: Disease-specific nonprofit with a similar infrastructure of support groups, research funding, provider guidelines, walks, and pharmaceutical corporate partnerships — making it a strong operational analog for the Sjögren's Foundation.
- Pulmonary Fibrosis Foundation: National disease-specific nonprofit with a comparable model of patient education, support groups, research funding, and pharmaceutical partnerships, focused on a chronic and underrecognized condition.
- Myasthenia Gravis Foundation of America: National disease-specific nonprofit for a relatively uncommon autoimmune condition. Comparable in scale, single-disease focus, and reliance on support groups, research grants, and a small professional staff.
- Scleroderma Foundation: National nonprofit for a rare systemic autoimmune disease with a similar patient-advocacy, support-group-network, and research-grant operating model — useful as a peer for the Sjögren's Foundation's governance and fundraising benchmarks.
- National Psoriasis Foundation: Mid-sized disease-specific health nonprofit with overlapping autoimmune patient demographics and a similar mix of advocacy, research grants, provider education, and fundraising events.
- Lupus Foundation of America: National disease-specific nonprofit for lupus, a closely related systemic autoimmune disease with predominantly female demographics and similar awareness, diagnosis-delay, and treatment-gap challenges. Operates an analogous model of support groups, research grants, and provider education.
Broad incumbents
- National Organization for Rare Disorders (NORD): Umbrella patient-advocacy organization that supports rare-disease patient groups with infrastructure, advocacy, and research. While Sjögren's is not strictly rare, NORD is a relevant adjacent peer for understanding the broader disease-specific nonprofit ecosystem.
- Arthritis Foundation: Largest US nonprofit addressing rheumatic/autoimmune conditions, including Sjögren's-adjacent diseases. Comparable in member-driven fundraising, walks, and provider resources, but operates across a much broader disease portfolio rather than Sjögren's specifically.
- National Multiple Sclerosis Society: Large, mature disease-specific health nonprofit with a comparable operating model — member programs, research grants, clinical care resources, walks, and major corporate sponsorships. Useful benchmark for scale, governance, and revenue diversification.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat6 records
Key risks6 records
Key highlights7 records
Customer concentration
Sjögren’s Foundation social profiles
Digital presenceSjögren’s Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
Sjögren’s Foundation leadership team
Management profileNumber of profiles
Profiles1 record
Sjögren’s Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Sjögren’s Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Sjögren’s Foundation
What does Sjögren’s Foundation do?
The Sjögren's Foundation is a 501(c)(3) nonprofit patient advocacy organization that provides disease education, patient support services, clinical practice guidelines, research funding, and community programs for individuals affected by Sjögren's disease. It operates the largest U.S. network of support groups and serves as the only national nonprofit exclusively focused on Sjögren's, supporting an estimated 4 million Americans with the condition.
Is Sjögren’s Foundation a public or private company?
Sjögren’s Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Sjögren’s Foundation founded?
Sjögren’s Foundation was founded in 1983. It employs 11 to 50 people.
Where is Sjögren’s Foundation based?
Sjögren’s Foundation is headquartered in Virginia, United States, in the North America region.
How does Sjögren’s Foundation make money?
Four revenue lines are on record. Donations and Charitable Contributions are the primary driver. The others are membership Program, events and Walks and corporate Memberships and Partnerships.
Who are Sjögren’s Foundation's main competitors?
Direct peers on record are American Autoimmune Related Diseases Association (AARDA), Crohn's & Colitis Foundation, Pulmonary Fibrosis Foundation, Myasthenia Gravis Foundation of America, Scleroderma Foundation, National Psoriasis Foundation and Lupus Foundation of America. Broad incumbents are National Organization for Rare Disorders (NORD), Arthritis Foundation and National Multiple Sclerosis Society.
Does Sjögren’s Foundation have an API?
No public API is recorded for Sjögren’s Foundation.
What industry is Sjögren’s Foundation in?
Sjögren’s Foundation's product category is Patient Advocacy and Disease Support Services. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 813212 and its SIC code is 8600.