Autoimmune Encephalitis Alliance

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 340 clinicians participating by 2023 year end.led by the two aea mab subcommittee leaders, the aea created a new and unique learning opportunity for members of our clinicians network and medical advisory board during the 2023 fiscal year. The aea challenging case conference offers the opportunity to discuss difficult cases, novel diagnostic/treatment strategies, etc. As the conference is open only to medical providers, the complete complicated nature of these conditions can be fully discussed. One or two ae cases are presented and discussed during each session. During 2023, the aea offered four conferences, with 201 registrants from 21 countries. In 2023, the aea partnered with physician experts at Massachusetts general hospital to sponsor a dinner and discussion at the 2023 annual american academy of neurology meeting in boston, ma. The event entitled "food for thought a discussion on the state and future of Autoimmune neurology" included presentations from nine researchers. The evening allowed 79 attendees from 13 countries to learn from each other and create new relationships.seed grant program in 2023, the aea mab research committee received 28 applications from seven countries and awarded three aea community seed grants totaling $20,000. All three research projects have direct implications for patients and families living with ae. The aea continued its signature fundraising effort for ae research, the research network, raising another $16k of seed funding for the 2024 round of research grants to be awarded in the spring of that year.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. In 2023 the aea collaborated with one of these key partners in market research into lgi1 Autoimmune Encephalitis. This effort included support to patient journey materials, infographics, and social media efforts. A final project abstract was presented at the 2023 nord fall conference entitled "the patient journey in lgi1 Autoimmune Encephalitis: collaborative insights for patient-centric support materials. Additionally, an abstract was presented at the Encephalitis society conference 2023 entitled "the patient journey in leucine-rich, glioma inactivated 1 (lgi1) Autoimmune Encephalitis: collaborative insights for patient-centric support materials".

Program 3: patient and caregiver supportin 2023, a record number of support groups were offered by the aea to the ae community - fifty-nine support groups with a total of 495 attendees and 102 unique individuals. The aea continued to offer four regional support groups northeast, south, midwest and west, however throughout the year, an additional three audience specific groups were added partners, individuals with ae and caregivers only. Whereas the regional support groups invite individuals with ae, caregivers, family members and friends to participate in the group, the audience specific groups allow participants to share more completely and openly the personal experiences and challenges unique to their specific group type. All seven support groups are peer-led by ten volunteers. Each volunteer is either diagnosed with ae or a caregiver.in recognition of research network month, aea family day focused on current ae research. The two-hour virtual event was facilitated by aea's mab research subcommittee leader and aea board member. A comprehensive overview of the current state and future of Autoimmune neurology was provided from four top researchers and clinicians in the field. Updates from aea partners in research were provided by aea partner sponsors, a prior grant recipient and a patient advocate. A physician aea service award was also given to a physician advocate who had made recent significant contributions in disease awareness. The event had 82 registrants from the ae community.in 2023, the aea took a unique approach to living with ae programming. Instead of offering a single program limited to a select number of people, the individuals with ae group was created in response to conversations within the aea regional support group community. The group meets twice a month during daytime hours and share real life experiences. This group will serve as a discussion laboratory for the development of future living with ae programs.

Program 2: ae disease awareness and advocacyour 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 2023, the aea took giant steps toward reaching that goal:the 6-word reason exercise (taken from the book living proof: telling your story to make a difference, 3rd edition) was conducted in all support groups. The exercise allowed support group members to contemplate and create their 6-word reason for speaking up about ae and sharing their journey.two living proof advocacy workshops were offered in 2023. The ae Alliance personal story practices workshop offered a 90-minute workshop to explore and begin defining the Alliance's guiding values and principles for including the aea communities' personal stories in our storytelling library. Ae patients, caregivers, board members and sponsor staff participated in the workshop conducted by a third party advocacy expert. The aea storytelling workshop offered two 90-minute workshops on story telling. Patients, caregivers, board members, support group leaders and staff members attended these workshops.lastly, during the 2023 year the ae storytelling library project was forged between the aea and a key pharmaceutical partner. In collaboration, an ae storytelling library will be developed for the aea community. This comprehensive project will include building the library on the aea website, collecting stories from the aea community, reviewing, approving, and posting stories, maintaining the library, and creating processes and procedure for all aspects of the library. Development efforts will begin in early 2024.