Autoimmune Encephalitis Alliance Inc

What it reported doing in 2025

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.

Financial Efficiency

• Mission deployment rate: 99.9%; rating input score 100
• Program expense ratio: 81%; rating input score 81

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
• Major donor itemization: Yes; rating input score 100

Sustainability

• Operating margin: -23.2%; rating input score 6; 6th percentile among comparable filings
• Total-asset coverage ratio: 0.38; rating input score 31; 31st percentile among comparable filings
• Liabilities to assets ratio: 0; rating input score 74; 74th percentile among comparable filings
• Officer compensation ratio: 50.2%; rating input score 5; 5th percentile among comparable filings

Growth

• Program expense growth: 13.6% per year; rating input score 100; 66th percentile among comparable filings
• Revenue growth: 4.9% per year; rating input score 100; 44th percentile among comparable filings
• Asset growth: 1.4% per year; rating input score 100; 30th percentile among comparable filings