ALGSAssistance Program

The ALGSAssistance Program provides targeted financial and supportive assistance to individuals and families affected by Alagille Syndrome (ALGS) who are experiencing hardship directly related to the burden of the disease.

Living with ALGS often involves complex medical care, frequent appointments, hospitalizations, surgeries, emotional strain, and disruptions to employment, education, and daily life. ALGSAssistance exists to help reduce financial and emotional pressure during these challenging periods so families can focus on care, stability, and healing.

All ALGSAssistance applications are reviewed on a case-by-case basis, as funding allows. Submitting an application does not guarantee approval.

Important Program Guidelines

  • Application Frequency:
    • Applicants may apply once within a 12-month period, regardless of assistance type.
  • Lifetime Application Limits:
    • Up to three (3) total applications across the following assistance types combined:
      • Financial Assistance
      • ALGS Assurance Support
      • Continuity of Care
    • In addition, applicants may receive up to
      three (3) Essential Mental Health Support applications
      over their lifetime.
  • Processing Time:
    • Please allow up to three (3) weeks for application review once all required documentation has been submitted.
  • Documentation Required:
    • To ensure fair review and responsible use of program funds, accurate and current documentation is required.
    • All bills submitted must be current and reflect the exact amount being requested and clearly show the account holder’s name, account or reference number, and third-party service provider information.
    • Outdated bills, estimates, or documents that do not match the amount requested cannot be accepted.
    • Screenshots of online accounts are acceptable only if they clearly display identifying information and the current balance owed.
    • Incomplete applications or applications with mismatched or unclear documentation will not be reviewed.
    • Providing accurate and detailed information allows ALGSA to fairly assess need and responsibly track program impact for partners and funders.

If you are unsure which assistance type best fits your situation, you may select
“General Assistance / Unsure” in the application, and ALGSA will determine the most appropriate category during review.

Types of Assistance Available

Financial Assistance

(Core Living Support)

Financial Assistance provides short-term support for core third-party bills when families are experiencing ALGS-related financial hardship. This may include assistance with:

  • Rent or mortgage payments
  • Utility bills
  • Auto loans or transportation-related expenses
  • Insurance premiums or similar essential obligations

Payments are made directly to third-party service providers. This support is intended to help stabilize households during periods of medical strain, employment disruption, or unexpected ALGS-related challenges.

Assurance Support

(Bereavement & End-of-Life Support)

ALGSAssurance Support offers compassionate assistance to families who have lost a loved one due to Alagille Syndrome. This support may help cover third-party expenses related to:

  • Burial or cremation
  • Funeral services
  • Memorial or celebration-of-life arrangements

This program exists to ease financial burden during a time of profound loss and to ensure families are not faced with overwhelming expenses while grieving.

Essential Mental Health

(Emotional & Psychological Care)

Essential Mental Health Support ensures access to meaningful mental health care for individuals affected by Alagille Syndrome and their caregivers.

ALGSA covers the cost of:

  • Four (4) one-hour counseling sessions, with the option for
  • Up to two (2) additional sessions, based on clinical assessment

Support may be provided either:

  • Through an ALGSA partnering psychologist, or
  • Through a local licensed mental health provider, identified with ALGSA assistance

Applicants may choose one option only (not both). This program recognizes mental health as a critical and necessary component of comprehensive ALGS care.

Continuity of Care

(Stability, Development & Recovery Support)

Continuity of Care assistance supports ALGS patients and families when medical, developmental, educational, or environmental challenges threaten stability or quality of life.

This assistance may help cover costs related to:

  • School supplies or educational accommodations
  • Medical, adaptive, or mobility equipment
  • Behavioral, emotional, sensory, or autism-related tools and resources
  • Therapeutic or exercise equipment that supports health and regulation
  • Recovery needs following catastrophic events (fire, flooding, severe weather, etc.)

The goal of this support is to help families maintain consistent care, routines, and developmental progress during ongoing or unexpected challenges.

How to Apply

To apply for assistance through the ALGSAssistance Program:

  • Complete the online application below
  • Specify exact dollar amounts requested
  • Upload all required documentation and third-party bills
  • Clearly describe your hardship and explain how it is directly related to the burden of Alagille Syndrome

ALGSA uses the information provided to ensure fair review, responsible stewardship of funds, and meaningful measurement of program impact.

Application Form

ALGSAssistance Program NEW

Assistance Selection


Patient & Applicant Information


Contact Information


Medical Context


ALGS Impact Narrative


Include how Alagille Syndrome is impacting your health or family, any related medical, caregiving, employment, or financial challenges, and why assistance at this time is needed.
Detailed responses help ALGSA fairly review your application.