Autoinflammatory Alliance Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
Rare Disease Organization. The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases. This includes supporting appropriate research and programs that will improve the lives of patients.
- Income
- $62,992
- Spending
- $38,656
- Reserves
- 39.1 months of spending
- Largest source of income
- other income, 57%
Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
We do not score finances when yearly spending is very small or the return has too little detail. The ratios stop meaning much at that size.
Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
This organization files the short tax form, which does not ask about boards, policies or audits. That is normal for a small charity and is not a mark against it.
Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $10,169 spent. A main focus of our nonprofit is to be a free resource online and print for education for patients and medical professionals.This includes hosting and coordinating efforts for International Autoinflammatory Awareness Month, Rare Disease Day, and research collaborations. We are also fundraising online to support for the 2026 3rd NIH Autoinflammatory and Immunedysregulatory Diseases Symposium, DLK evening reception. Plus a Task Force Working group to work on Clinical Trial Modular Outcome Measures to improve future treatment clinical trial design that is tailored to rare autoinflammatory and immunedysregulatory diseases to make a positive change for research and treatment for patients. Our costs for the hosting, plug-ins, domains, SSL certificates, managed hosting for 4 websites and subdomains, and materials in print, mailed to those in need at no cost, or to download online for free are a part of our operating budget yearly. Costs for autoinflammatory.org and the subdomains for our main site, that also includes downloadable information. We also have saidsupport.org, which is a leading source of information in a blog format based on covering common questions we get from patients and medical professionals, plus other resources, advocacy and engagement, patient stories and more to help patients and caregivers to better understand and become empowered to manage these complex, rare diseases. We also host the official International Autoinfammatory Awarness Month site at autoinflammatorymonth.org to feature global events, upcoming events and activities for engagement and awareness. Also, autoinflammatory-search.org is a leading resource for medical professionals to compare and consider the features of various autoinflammatory disease symptoms and findings, which has expert medical editors for these diseases. Our main website and this search database need to be updated and improved in 2026 to cover some of the more newly classified diseases. We also participate, and support a lot of research The total costs for this outreach to support education, awareness and research efforts from our org in 2025 was $10,168.79
- $2,748 spent. Patient advocacy and international patient advocacy, including research representation and collaboration meetings. Karen Durrant RN, BSN-President of the Autoinflammatory Alliance is also the unpaid patient organizations representative for the International Society of Systemic Autoinflammatory Diseases (ISSAID.) Karen had to attend and assist as a patient advocate and member of the ISSAID steering committee for the April 2025 ISSAID Paris Congress to participate and speak at a patient program hosted by French organizations, and also attend ISSAID to participate in programs there, some research meetings in concurrent sessions to advocate for patient needs, and get the latest updates to share to our patient community on autoinflammatory and immunedysregulatory diseases at the congress. In addition, Karen represented patients in other advocacy roles throughout the year virtually, or in person as a part of the Childhood Arthritis Rheumatology and Research Aliance (CARRA), ISSAID, the Translational Autoinflammatory Disease Network (TARN), and the Unite4Rare Global Council (all unpaid-no money or stipends go to Karen Durrant-any funds, if offered are directly paid to the Autoinflammatory Alliance.)
- Supporting Autoinflammtory Disease Research with innovative research for unmet needs. The Autoinflammatory Alliance has fundraised and worked with our scientific advisors, and also our patient community and families that have done fundraising to help determine the right programs to support for advancing care and research for systemic autoinflammatory diseases. In 2025, we were able to find the right program at the NIH NIAID Translational Autoinflammatory Research Institute Gift Fund to support research for the severe form of CAPS, including NOMID/CINCA and the new complications affecting some patients with all forms of CAPS globally that are experiencing amyloidosis induced by one of the few, or only medication to treat their form of CAPS-especially for NOMID patients that need this medication to get to the brain. The medication-induced amyloidosis is a new, and concerning issue that has been found to not only cause some lumps and tissue issues in the injection sites that can start to grow enormous in some cases, but a few are developing life limiting systemic medication induced amyloidosis. $18,000 was donated to the NIAID TARI gift fund in 2025 to directly support the research study to develop a new scanning method to check patients for this amyloidosis to see if it is in the tissues and organs in the body, since it is otherwise impossible to biopsy randomly internal organs, or all over the skin at multiple sites without a risk to patients. This scanner and future new medication trials to find another drug to treat these patients instead of this current one causing this issue were supported with this grant. In addition, $7500 was donated to start the TNFAIP3 HA20 Registry with NORD and the University of Pittsburgh, which is needed to better understand the many forms and issues that this more newly discovered disease can cause. We paid this money in 2025, and received a reimbursement for the money in 2026 from the University of Pittsburgh once they received their grant funds, and we had established this as a NORD member org. This registry will be finalized in 2026, and there will be some ongoing costs that we will support and receive some reimbursement. We are a NORD member org, and this registry with IAMRARE must be done in collaboration with researchers, our scientific advisors, and NORD, along with U Pitt researchers. These funds are being used strictly for this registry, and not financially benefitting any scientific advisor or board member of the Autoinflammatory Alliance. Total grants paid out for research in 2025= $25,500.
Source: Form 990EZ for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since March 2007.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
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