Alagille Syndrome Alliance

What Alagille Syndrome Alliance does

The Alagille Syndrome Alliance is a nonprofit patient advocacy and support organization serving individuals and families affected by Alagille syndrome, a rare genetic liver disorder. Founded in 1993 and headquartered in Collierville, United States, the organization operates under a mission-driven model rather than a commercial one, with its primary stakeholders being patients, caregivers, clinicians, and researchers connected to the rare-disease community. Its core activities, as described in available sources, center on educational resources, community support, research advocacy, and awareness programs, with no commercial technology products or revenue-generating services identified in the data.

The organization's output consists of advocacy and informational deliverables rather than software or hardware products. There is no disclosed proprietary technology, platform architecture, or technical stack in the input; the products and services array is empty and the product overview explicitly characterizes the organization as providing non-commercial advocacy services. Its business model is consistent with a typical 501(c)-style nonprofit: funding is presumed to derive from donations, grants, and member contributions, but no revenue figures, donor base, grant pipeline, or audited financials are available in the source material. No headcount, leadership roster, partnerships, certifications, patents, or regulatory actions are disclosed, and the primary source page (alagille.org) was inaccessible (loading/verification page) at time of data collection, which materially limits the depth of this analysis. The single confirmed source identifier across the dataset is.

Name

Alagille Syndrome Alliance

Website

https://alagille.org

Company type

Private

Founded year

1993

Operating status

Operating

Headcount range

1–10 employees

Short description

The Alagille Syndrome Alliance is a nonprofit patient advocacy organization, founded in 1993 and based in Collierville, United States, that supports individuals and families affected by Alagille syndrome through education, community programs, research advocacy, and awareness initiatives.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Rare disease advocacy
• Patient support services
• Genetic disorder resources
• Community health support
• Medical research advocacy

Headquarters

HQ city

Collierville

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales

Core offering

Alagille Syndrome Alliance is a nonprofit patient advocacy organization that provides educational resources, community support, research advocacy, and awareness programs for individuals and families affected by Alagille syndrome, a rare genetic liver disorder. The organization focuses on connecting affected families, disseminating medical information, and funding/advancing research into the condition.

Product overview

The Alagille Syndrome Alliance is a nonprofit patient advocacy and support organization dedicated to individuals and families affected by Alagille Syndrome, a rare genetic liver disorder. The organization provides educational resources, community support, research advocacy, and awareness programs rather than commercial technology products or services.

Differentiator

Problem solved

Functional benefit

Products and services

• Alagille Syndrome Educational Resources
• Community Support Programs

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Recent moves1 record

Broad incumbents

• National Kidney Foundation: Major US patient advocacy nonprofit for kidney disease. Alagille syndrome has significant renal manifestations, making this an adjacent but materially comparable advocacy organization serving patients with overlapping disease complications.
• American Liver Foundation: National nonprofit focused on liver disease education, research, and advocacy. Directly comparable mission overlap with the Alliance's liver-focused work, but operates at a much broader scale across all liver conditions.
• National Organization for Rare Disorders (NORD): Largest US umbrella advocacy organization for rare diseases. Comparable as a peer patient advocacy nonprofit operating in the same rare disease support, research advocacy, and awareness space, though broader in scope than the Alagille-specific Alliance.
• Global Liver Institute: Liver-focused nonprofit that coordinates advocacy across multiple liver disease communities. Comparable in operating model and liver-disease mission but serves as an umbrella rather than a disease-specific organization.

Direct peers

• Biliary Atresia Research and Education (BARE): Rare pediatric liver disease advocacy organization focused on biliary atresia. Directly comparable target population (families affected by a rare pediatric cholestatic liver disease) and program mix of support, awareness, and research advocacy.
• Alpha-1 Foundation: Disease-specific patient advocacy nonprofit for Alpha-1 antitrypsin deficiency, a rare genetic condition affecting the liver (and lungs). Directly comparable model: small, single-disease nonprofit with research funding, family support, and awareness programs.
• Children's Liver Disease Foundation (CLDF): UK-based nonprofit supporting children and families affected by pediatric liver diseases, including rare cholestatic conditions. Closest functional peer to the Alliance: same disease category, same family-support and research-advocacy model.
• PSC Partners Seeking a Cure: Patient-driven nonprofit supporting those affected by Primary Sclerosing Cholangitis (PSC), another rare cholestatic liver disease. Highly comparable model: disease-specific education, patient support, and research grantmaking.
• PFIC Alliance: Patient advocacy organization for Progressive Familial Intrahepatic Cholestasis (PFIC), a rare genetic liver disease in the same clinical family as Alagille syndrome. Closely comparable disease-specific advocacy structure, target community, and programmatic mix.

Emerging players

• ChiLDReN Network: Research consortium supporting multiple rare pediatric cholestatic liver diseases including Alagille syndrome. Complementary rather than directly competitive, but operates in the same patient/research community with overlapping investigator and clinical relationships.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat2 records

Key risks4 records

Key highlights4 records

Customer concentration

• LinkedInlinkedin.com/company/alagille-syndrome-alliance

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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

Frequently asked questions about Alagille Syndrome Alliance