Autoimmune Neurology Alliance

What Autoimmune Neurology Alliance does

Autoimmune Neurology Alliance (AiNA) is a 501(c)(3) public charity (IRS EIN 39-5058002; Massachusetts AGO Charity Number 086739) dedicated to advancing research in rare autoimmune neurological disorders. Its sole core product is the AXIS Autoimmune Neurology Registry, a 10-year longitudinal, patient-centered research platform launched in 2024 starting with myasthenia gravis (MG), with planned expansion to chronic inflammatory demyelinating polyneuropathy (CIDP), Guillain-Barré syndrome (GBS), neuromyelitis optica spectrum disorder (NMOSD), and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD). The registry captures monthly digital questionnaire data on symptom variability, treatment use, and quality of life using validated instruments (MG-ADL and MG-QOL-15r), is governed by both a Scientific Advisory Committee and a Patient Governance Committee, and is designed for linkage with clinician-reported and administrative claims data to support comprehensive real-world evidence generation.

The platform was developed in partnership with Alira Health, which provides research and technology expertise. Patient enrollment is self-serve through a dedicated portal (axispatientregistry.com), with diagnosis-confirmed enrollment and optional patient-co-developed modules. AiNA's go-to-market is community-led, relying on its organizational website (ainalliance.org), direct outreach, and partnerships with patient advocacy groups, academic researchers, neurologists, life science companies, and non-profits.

As a non-profit, AiNA generates revenue exclusively through charitable donations, offering preset amounts of $10, $20, $30, and $40 with custom options across one-time, weekly, monthly, quarterly, and annual frequencies, and the ability for donors to designate contributions to a specific condition. No revenue figures, headcount, or funding rounds are disclosed, and no management team or external investors are identified in the available data.

Name

Autoimmune Neurology Alliance

Legal name

Autoimmune Neurology Alliance

Website

https://ainalliance.org

Company type

Private

Operating status

Operating

Short description

Autoimmune Neurology Alliance (AiNA) is a 501(c)(3) non-profit operating the AXIS Autoimmune Neurology Registry, a 10-year longitudinal research platform capturing real-world patient experiences across myasthenia gravis and related autoimmune neurological conditions for use by patients, researchers, neurologists, and life science companies.

Ownership category

akta.pro rank

Product category

Patient Registry & Real-World Evidence Research

NAICS

Research and Development in the Physical, Engineering, and Life Sciences (54171), Scientific Research and Development Services (5417)

SIC

Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Real-World Data (RWD) / Real-World Evidence (RWE) & Observational Research Platforms (HLACAOAM)

akta.pro secondary industry

eCOA/ePRO/eDiary & Patient-Facing Data Collection (HLACAOAB)

Keywords

• Patient registry platform
• Autoimmune neurology research
• Real-world evidence generation
• Longitudinal health data
• Patient-reported outcomes

GTM type

B2B

Offering type

Services

Cost components

Personnel, Technology or R&D, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: As a 501(c)(3) public charity, AiNA relies on tax-deductible donations from individuals, organizations, and potentially institutional funders. The organization accepts one-time, weekly, monthly, quarterly, and annual donations with preset amounts ($10, $20, $30, $40) and custom amounts. Donors can optionally cover transaction fees.

Pricing tiers

Go-to-market motion1 record

Distribution channels1 record

Marketing channels3 records

Core offering

Autoimmune Neurology Alliance (AiNA) operates the AXIS Autoimmune Neurology Registry, a 10-year longitudinal, patient-centered research platform that captures real-world experiences of people living with autoimmune neurological conditions (starting with myasthenia gravis, with planned expansion to CIDP, GBS, NMOSD, and MOGAD). Participants complete monthly digital questionnaires using validated instruments (MG-ADL and MG-QOL-15r), with the platform developed in partnership with Alira Health and governed by a Scientific Advisory Committee and a Patient Governance Committee.

Product overview

Autoimmune Neurology Alliance is a 501(c)(3) non-profit organization operating as a single-product entity centered on the AXIS Autoimmune Neurology Registry. AXIS is a longitudinal research registry developed in partnership with Alira Health that captures real-world patient experiences across autoimmune neurological conditions (starting with myasthenia gravis), using monthly digital questionnaires with validated clinical instruments to generate evidence for research, care delivery, and drug development. The organization also accepts donations designated to specific autoimmune neurological conditions (MG, CIDP, GBS, NMOSD, MOGAD).

Differentiator

Problem solved

Functional benefit

Products and services

• AXIS Autoimmune Neurology Registry A 10-year longitudinal, patient-centered research registry that captures real-world experiences of people living with autoimmune neurological conditions, starting with myasthenia gravis and expanding to other conditions (CIDP, GBS, NMOSD, MOGAD). It collects monthly digital questionnaire data on symptom variability, treatment use, and quality of life using validated instruments (MG-ADL, MG-QOL-15r), with governance by a Scientific Advisory Committee and a Patient Governance Committee. Designed for researchers, clinicians, life science companies, patient advocacy groups, and patients.

Quantifiable outcome

• 10-year longitudinal data capture with monthly digital questionnaires
• +2 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

One partnership is on record.

• Alira HealthcoreStrategic or Co-development PartnerAlira Health is a strategic partner in the development and operation of the AXIS Autoimmune Neurology Registry. The registry is described as 'Developed by the Autoimmune Neurology Alliance in partnership with Alira Health.' Alira Health brings research and technology expertise to this 10-year longitudinal research initiative designed to capture real-world experiences of people living with autoimmune neurology conditions.

Scale indicators3 records

Recent moves5 records

Expansion highlights5 records

Emerging players

• Antidote (formerly TrialReach): A digital patient engagement and clinical trial matching platform that connects patients with rare diseases to research opportunities. Comparable as enabling infrastructure for patient recruitment into registries and trials, including autoimmune and neurological conditions served by AiNA.
• Alira Health: A healthcare and life sciences advisory and technology firm that is AiNA's strategic partner on the AXIS Registry. It is comparable as a builder of real-world evidence platforms and clinical research infrastructure for patient foundations and life-science clients.

Direct peers

• The Guthy-Jackson Charitable Foundation: A leading research-driven non-profit focused exclusively on NMOSD, one of AiNA's target conditions. Like AiNA, it funds research and builds scientific infrastructure around a rare autoimmune neurological disorder, making it a directly comparable disease-focused research foundation.
• Foundation for Sarcoidosis Research: A patient advocacy and research funding non-profit for sarcoidosis. It is comparable as a rare-disease non-profit combining community engagement, research funding, and patient-centered evidence generation, analogous to AiNA's autoimmune neurology mission.
• Myasthenia Gravis Foundation of America: A national patient advocacy and research organization for myasthenia gravis, directly comparable to AiNA's lead disease focus. MGFA also funds research and supports patient engagement, and represents both a potential partner and overlapping registry stakeholder in the same condition.
• Castleman Disease Collaborative Network: A non-profit that accelerates research into Castleman disease by coordinating patients, clinicians, and researchers and building research infrastructure. Closely mirrors AiNA's model of a small, research-focused non-profit building patient-centered evidence infrastructure for a rare disease.
• GBS/CIDP Foundation International: A patient advocacy and research foundation covering GBS and CIDP, two of AiNA's five target conditions. It is directly comparable as a disease-focused non-profit combining advocacy, patient engagement, and research support in autoimmune neurology.
• The Sumaira Foundation for NMO: A patient-driven non-profit supporting research and community for NMOSD and MOGAD, both within AiNA's scope. It mirrors AiNA's model of combining patient advocacy with research infrastructure in a rare autoimmune neurology niche.

Broad incumbents

• IQVIA: A global provider of advanced analytics, technology solutions, and real-world evidence services to the life-sciences industry. Comparable to AiNA as a supplier of real-world evidence and clinical research informatics, though at vastly greater scale and across all therapeutic areas.
• TriNetX: A global health research network providing real-world data and observational research capabilities to life-science companies and academic researchers. It is comparable to AXIS as a real-world evidence and observational research platform, though broader in scope and not disease-specific.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Autoimmune Neurology Alliance