Autoimmune Encephalitis Alliance Inc
Public records show a registered, tax-exempt organization in good standing.
What it says it does
TO SUPPORT ALL MEMBERS OF THE AE COMMUNITY SO NO ONE FACES AE ALONE.
- Income
- $150,758
- Spending
- $185,778
- Reserves
- 4.6 months of spending
- Largest source of income
- donations and private grants, 100%
- Highest pay
- $108,580, executive director
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
Fair: 57 out of 100. Higher than 21% of charities in its peer group (diseases, under $250k).
Reserves
20 of 35Spendable reserves would cover 4.6 months of spending.
Debt
20 of 20It owes 0% of what it owns.
Living within its means
0 of 15Spending exceeded income by 23% of income.
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)
- $61,869 spent. PROGRAM 1: PHYSICIAN SUPPORT AND EDUCATIONTHE AUTOIMMUNE ENCEPHALITIS ALLIANCE (AEA) MEDICAL ADVISORY BOARD PROVIDES GUIDANCE TO THE AEA'S PROGRAMS SUPPORTING PHYSICIAN EDUCATION, RESEARCH, AND CLINICAL CARE. THE MEDICAL ADVISORY BOARD (MAB) INCLUDES RENOWNED EXPERTS ON AUTOIMMUNE ENCEPHALITIS (AE) FROM A VARIETY OF KEY DISCIPLINES - NEUROLOGY, RHEUMATOLOGY, AND PSYCHIATRY AND FOCUSES SPECIFICALLY ON CLINICAL CARE AND RESEARCH EFFORTS TO THE AE COMMUNITY. IN ADDITION TO THE MAB, THE AEA'S CLINICIANS NETWORK CONTINUES TO BE A PREMIER SOURCE WORLDWIDE FOR PATIENTS AND CAREGIVERS SEEKING PHYSICIANS WHO HAVE EXPERIENCE TREATING AE. THE PHYSICIANS IN OUR CLINICIANS NETWORK INCLUDE EXPERTS IN THE FIELD OF AUTOIMMUNE ENCEPHALITIS, AND FREQUENTLY PARTICIPATE IN RESEARCH, CONDUCT CLINICAL TRIAL STUDIES, AND SPEAK IN NATIONAL FORUMS ABOUT THIS RARE DISEASE. THE NETWORK IS THE LARGEST NATIONAL REGISTRY OF PHYSICIANS TREATING AE - A TOTAL OF 401 CLINICIANS PARTICIPATING BY 2025 YEAR END.THE AEA PROVIDER EDUCATION SERIES CONTINUES TO PROVIDE ENGAGING DIDACTIC PRESENTATIONS AND INTERACTIVE DISCUSSIONS TO MEMBERS OF THE AEA CLINICIANS NETWORK, THE AEA MEDICAL ADVISORY BOARD AND NEUROIMMUNOLOGY FELLOWSHIP PROGRAMS. EXPERTS IN THE FIELD OF AE VOLUNTEER TO PRESENT FROM THEIR AREAS OF EXPERTISE. THE HOUR IS DEEP DIVE INTO EXPERT KNOWLEDGE AND EXPERIENCE IN THE FIELD OF AUTOIMMUNE ENCEPHALITIS AS WELL AS AN OPPORTUNITY FOR FELLOW PROFESSIONALS TO CONNECT, SHARE INSIGHTS, AND LEARN FROM REAL-LIFE CASES. IT IS AN EXCELLENT OPPORTUNITY TO ENHANCE KNOWLEDGE, NETWORK WITH LIKE-MINDED INDIVIDUALS AND BUILD A STRONGER AE COMMUNITY OF MEDICAL EXPERTS.WHILE THIS IS A PROVIDER ONLY SESSION, ALLOWING THE COMPLETE COMPLICATED NATURE OF THESE CONDITIONS TO BE FULLY DISCUSSED, THE DIDACTIC PORTION IS RECORDED AND SHARED ON THE AEA WEBSITE FOR THE ENTIRE AEA COMMUNITY TO MEET DOCTORS AND LEARN THE MOST CURRENT AE INFORMATION. (NOTE: THE DISCUSSION PORTION IS NOT RECORDED.)DURING 2025, THE AEA OFFERED SEVEN PROVIDER EDUCATION SESSIONS, WITH 236 REGISTRANTS FROM 18 COUNTRIES. (NOTE: IN JUNE 2025, WE BEGAN POSTING RECORDED SESSIONS ON THE AEA YOUTUBE PAGE. CURRENTLY, NINE VIDEOS HAVE RECEIVED A TOTAL OF 1564 VIEWS.)IN 2025, THE AEA PARTNERED WITH PHYSICIAN EXPERTS FROM THE UNIVERSITY OF CALIFORNIA SAN FRANCISCO TO SPONSOR A DINNER AND DISCUSSION AT THE 2025 ANNUAL AMERICAN ACADEMY OF NEUROLOGY MEETING IN SAN DIEGO, CA. THE EVENT ENTITLED "REFLECTIONS ON AUTOIMMUNE ENCEPHALITIS AND ADVANCES IN THE FIELD" INCLUDED PRESENTATIONS FROM 5 RESEARCHERS FROM THE US AND THE NETHERLANDS. THE EVENING ALLOWED OVER 125 ATTENDEES FROM 15 COUNTRIES TO LEARN FROM EACH OTHER AND CREATE NEW RELATIONSHIPS.
- $20,342 spent. PROGRAM 2: RESEARCH - AEA EDWARD ARDITTE COMMUNITY SEED GRANT PROGRAMTHE AEA EDWARD ARDITTE COMMUNITY SEED GRANT PROGRAM RECEIVED 17 APPLICATIONS FROM 7 COUNTRIES IN 2025. AFTER A RIGOROUS REVIEW, THE AEA MAB RESEARCH COMMITTEE PROPOSED A SINGLE APPLICATION TO THE AEA BOARD OF DIRECTORS FOR FUNDING AND APPROVAL. THE PROPOSED PROJECT WAS APPROVED AND FUNDED FOR $10,000. THE PROJECT HAS DIRECT IMPLICATIONS FOR PATIENTS AND FAMILIES LIVING WITH AE. IN MAY OF 2025 THE AEA CONTINUED ITS SIGNATURE FUNDRAISING EFFORT, RESEARCH NETWORK, TO FUND THE AEA EDWARD ARDITTE COMMUNITY SEED GRANT PROGRAM FOR AE RESEARCH. CONTRIBUTIONS RAISED IN 2025 AS WELL AS RECURRING RESEARCH CONTRIBUTION COMMITMENTS THROUGH JUNE 2026 WILL GO TO FUND THE 2026 SEED GRANT AWARDS CHOSEN IN JUNE.
- $68,360 spent. PROGRAM 3: PATIENT SUPPORT, DISEASE AWARENESS AND ADVOCACYIN 2025, 69 SUPPORT GROUPS WERE OFFERED VIA ZOOM TO SUPPORT THE AE COMMUNITY WITH A TOTAL OF 613 ATTENDEES AND 123 UNIQUE INDIVIDUALS. TWO COMMUNITY SUPPORT GROUPS ARE OFFERED EACH MONTH AND FOUR AUDIENCE SPECIFIC GROUPS - PARTNERS, INDIVIDUALS WITH AE, CAREGIVERS ONLY AND BEGINNING AGAIN WITH AE. THE AUDIENCE SPECIFIC GROUPS ALLOW PARTICIPANTS TO SHARE MORE COMPLETELY AND OPENLY THE PERSONAL EXPERIENCES AND CHALLENGES UNIQUE TO THEIR SPECIFIC GROUP TYPE. ALL FIVE SUPPORT GROUPS ARE PEER-LED BY TEN VOLUNTEERS. EACH VOLUNTEER IS EITHER DIAGNOSED WITH AE OR A CAREGIVER. THESE 5 TYPES OF SUPPORT GROUPS MEET A TOTAL OF 6-7 TIMES PER MONTH AND ALLOW PEOPLE LIVING WITH AE TO NOT ONLY SHARE ABOUT THE RARE DISEASE IMPACTING THEIR LIVES BUT ALSO PROVIDE A PLACE THAT NO ONE HAS TO EXPLAIN AND QUESTION IF ANYONE UNDERSTANDS. THESE GROUPS SERVE AS A DISCUSSION LABORATORY FOR THE DEVELOPMENT OF FUTURE LIVING WITH AE PROGRAMS.AS A RARE DISEASE PATIENT ORGANIZATION, THE AEA PARTNERS WITH PHARMACEUTICAL ORGANIZATIONS AND DIAGNOSTIC LABORATORIES COMMITTED TO IMPROVING SOLUTIONS FOR DIAGNOSIS AND TREATMENT OF AUTOIMMUNE ENCEPHALITIS. THESE RELATIONSHIPS ARE CRITICAL FOR COMMUNICATION, EDUCATION AND RELATIONSHIP BUILDING BETWEEN THE SCIENTISTS, RESEARCHERS, BUSINESS PROFESSIONALS, ETC. AND THE PATIENTS AND FAMILY MEMBERS LIVING WITH AE. SINCE 2020, THE AEA HAS PARTNERED WITH ONE OF THESE KEY ORGANIZATIONS AS PART OF A GLOBAL COLLECTIVE OF FIVE LIKE-MINDED RARE NEUROIMMUNE PATIENT ADVOCACY GROUPS TO SHARE EXPERIENCES AND CHALLENGES, IDENTIFY OPPORTUNITIES FOR IMPROVING PATIENT CARE AND DISCOVER OPPORTUNITIES FOR COLLABORATION TO BENEFIT ALL RARE NEUROIMMUNE CONDITIONS. IN 2025, THE INSPIRE COLLECTIVE COMMITTED TO DEVELOPING THE FUTURE GENERATION OF RARE DISEASE ADVOCATES. TOGETHER, WE PLANNED AND LAUNCHED THE INSPIRE YOUTH COUNCIL WITH THE AIM TO INSPIRE AND TRAIN THE NEXT GENERATION OF ADVOCATES TO IMPROVE FUTURE HEALTH OUTCOMES FOR PEOPLE WITH RARE NEUROIMMUNE CONDITIONS. IN 2025, FOUR PATIENT ADVOCACY GROUPS PARTNERED TO OFFER THE WORLD ENCEPHALITIS DAY ALLIANCE (WEDA) CONFERENCE, AN IN-PERSON EVENT HONORING WORLD ENCEPHALITIS DAY. APPROXIMATELY, 80 PEOPLE WITH ENCEPHALITIS AND THEIR FAMILIES JOINED TOGETHER FOR THE 2-DAY CONFERENCE TO LEARN FROM EXPERTS IN ENCEPHALITIS PHYSICIANS, RESEARCHERS AND INDIVIDUALS AND FAMILIES WITH LIVED EXPERIENCE. WE WERE GRATEFUL TO THE MAYO CLINIC -JACKSONVILLE FOR HOSTING THE EVENT. OUR LONG-TERM GOAL FOR THE 'AE ON THE HILL' PROGRAM IS TO EMPOWER THE AE COMMUNITY TO ADVOCATE FOR THEMSELVES AND THEIR FAMILIES AT THE LOCAL, STATE, AND FEDERAL LEVELS TO IMPROVE THE LIVES OF ALL THOSE AFFECTED BY AUTOIMMUNE ENCEPHALITIS. IN 2025, THE AEA CONTINUED WORKING TOWARD THAT GOAL THROUGH PATIENT AND CAREGIVER STORY TELLING. WHILE THE GROUNDWORK FOR THIS PROGRAM WAS COMPLETED IN 2024, THE AE STORYTELLING LIBRARY CAME TO LIFE IN 2025. FOUR PILOT VIDEOS WERE PUBLISHED ON THE AEA WEBSITE AND YOUTUBE CHANNEL AND HAVE RECEIVED ALMOST 2000 VIEWS.
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 2013.
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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