Overview
What is Autoimmune Encephalitis Alliance Inc?
Autoimmune Encephalitis Alliance Inc, based in Durham, North Carolina, is a dedicated nonprofit organization that supports individuals and families affected by Autoimmune Encephalitis (AE). With a mission to ensure no one faces AE alone, they offer various services. Their Clinicians Network is a global resource for patients and caregivers, providing access to experienced physicians specializing in AE. This network, comprising 270 clinicians by 2022, is instrumental in research, clinical trials, and national forums related to AE. The Medical Advisory Board, consisting of experts from neurology, rheumatology, and psychiatry, focuses on patient and physician education and research grants. In 2022, they funded a significant research clinical trial and collaborated with UCB Pharma on an LGI-1 patient journey market research project. Additionally, they raise funds for AE research through their signature event, the Research Network, which provides seed funding for annual research grants.
Official website here: www.aealliance.org
Is Autoimmune Encephalitis Alliance Inc legitimate?
Autoimmune Encephalitis Alliance Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. Autoimmune Encephalitis Alliance Inc submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $20,313
Professional Fundraising Fees: $0
Other Salaries and Wages: $75,417
For more financial information, click here
Official website here: www.aealliance.org
What is the mission statement of Autoimmune Encephalitis Alliance Inc?
The Autoimmune Encephalitis Alliance Inc's mission is centered around supporting individuals affected by Autoimmune Encephalitis (AE). They aim to connect patients, families, and medical providers to advance knowledge and advocate for each other, ensuring no one faces AE alone. The organization operates a Clinicians Network, a premier global source for patients and caregivers seeking specialists in AE. This network includes renowned experts in the field who frequently participate in research, conduct clinical trials, and speak about the rare disease. Additionally, the Alliance supports significant research clinical trials, partners with pharmaceutical companies for patient research projects, and has a Medical Advisory Board that focuses on patient and physician education and research grants. The Alliance also raises funds for AE research and awards seed grants to advance research in the field.
Official website here: www.aealliance.org
Who is the CEO of Autoimmune Encephalitis Alliance Inc?
Bill Gavigan is the Chair of Autoimmune Encephalitis Alliance Inc. The CEO's salary of Autoimmune Encephalitis Alliance Inc is $13,531 and their total compensation is $20,313.
Official website here: www.aealliance.org
What is the revenue of Autoimmune Encephalitis Alliance Inc?
Autoimmune Encephalitis Alliance Inc's revenue in 2022 was $217,693.
Official website here: www.aealliance.org
Who are the executives of Autoimmune Encephalitis Alliance Inc and what are their salaries?
The average compensation at Autoimmune Encephalitis Alliance Inc during 2022 was $47,865. There are 2 employees and 30 volunteers at Autoimmune Encephalitis Alliance Inc.
Here are 9 key members and their salaries (Autoimmune Encephalitis Alliance Inc's CEO's salary is $13,531 and their total compensation is $20,313):
- Compensation: $13,531
- Related: $0
- Other: $6,782
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
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- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
- Compensation: $0
- Related: $0
- Other: $0
Official website here: www.aealliance.org
Where can I find the form 990 for Autoimmune Encephalitis Alliance Inc?
Autoimmune Encephalitis Alliance Inc's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.aealliance.org
Learn more at the official website: www.aealliance.org
Mission Statement of Autoimmune Encephalitis Alliance Inc
The Autoimmune Encephalitis Alliance Inc, a community-focused organization, strives to improve the lives of individuals affected by Autoimmune Encephalitis (AE). Their mission is to connect patients, families, and medical providers to advance knowledge and advocate on behalf of those affected by AE. By doing so, the Alliance aims to ensure that no one faces this rare disease alone.
To accomplish this, the Autoimmune Encephalitis Alliance Inc has established a Clinicians Network, which serves as a premier source for patients and caregivers seeking physicians with expertise in treating AE. This network includes renowned experts in the field of AE, who frequently participate in research, conduct clinical trials, and share their insights in national forums. The Network is a significant resource, with a total of 270 participating clinicians by 2022.
The Alliance also supports research and clinical trials, providing necessary resources to enable their completion and publication within the AE physician and patient communities. In addition, they collaborate with pharmaceutical companies to gather patient experiences and insights, contributing to a deeper understanding of AE. The Alliance's Medical Advisory Board, comprised of experts in neurology, rheumatology, and psychiatry, plays a crucial role in patient and physician education and in overseeing the AE Community Research Grant Program.
In essence, the Autoimmune Encephalitis Alliance Inc's mission is to provide a supportive network for patients and families, foster collaboration between medical providers, and advocate for the AE community. By connecting individuals and driving research, the Alliance aims to improve the understanding and treatment of AE, ensuring that no one faces this challenging condition alone.
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Impact
October, 2024
The Autoimmune Encephalitis Alliance Inc. plays a vital role in supporting individuals affected by autoimmune encephalitis (AE), ensuring that no one has to navigate the complexities of this condition alone. By fostering a strong community among patients, families, and medical providers, the organization enhances knowledge and advocacy, significantly improving the lives of those dealing with AE.
Through initiatives aimed at research, clinical care, and physician education, the Alliance maintains a prominent clinicians network that connects patients to experienced medical professionals who specialize in AE treatment. This network, which includes 270 renowned experts, is crucial for guiding patients toward effective care while also participating in meaningful research and clinical trials aimed at advancing the understanding of AE.
In 2022, the organization supported a critical research clinical trial and collaborated with UCB Pharma to conduct a comprehensive market research project that gathered valuable data on patient experiences with LGI-1 AE. The establishment of a Medical Advisory Board consisting of experts from various disciplines further underscores its commitment to patient education and advancing research through seed grants.
These efforts not only promote awareness but also generate funding for continued research, directly impacting the advancement of knowledge and treatment options for AE. Overall, the Autoimmune Encephalitis Alliance Inc. serves as a cornerstone of support and knowledge, making a significant difference in the AE community.
This information is meant to be a general summary of Autoimmune Encephalitis Alliance Inc. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Investment Income: -$106
- Gross Receipts: $242,294
Assets and Liabilities:
- Total Assets: $193,519
- Total Liabilities: $0
- Net Assets: $193,519
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Organization Details
Founding Year
2012
Phone
(919) 602-1484Principal Officer
Bill Gavigan
Main Address
811 9TH STREET SUITE 120-101, DURHAM, NC, 27705
Website
www.aealliance.orgNTEE Category
Code: G99 - Disease
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