ALGSAccess Program - General Support

ALGSAccess Program

Purpose: Improve access to medications, supplements, services, clinical trials, and research opportunities for patients and families affected by ALGS. Created to combat private and government insurance denials for medical care, medications, supplements, equipment, and other needs.

What the Program Provides:

• Support letters to aid in appealing for approval of VA services
• Support for disability approval appeals
• Assistance with insurance denials related to ALGS care
• Guidance on accessing clinical trials and research opportunities
• Travel scholarships for event attendance
• Event travel and attendance support
• Access to medications, clinical trials, and research opportunities

Eligibility: Patients and families affected by Alagille Syndrome

Geographic Scope: Primary focus on US but international support available

Contact Information:

• Email: alagille@alagille.org
• Phone: 989.218.9028
• Website: alagille.org
• Mailing Address: Alagille Syndrome Alliance, P.O. Box 22, Collierville, TN 38027

Application Process

Submission: Contact via the program contact form on the ALGSAccess Program page

Required Information:

• Description of access barrier or denial
• Relevant medical and insurance information
• Type of support needed (support letter, appeal assistance, etc.)

Contact Methods:

• Complete online contact form at: https://alagille.org/programs/access-program/
• Email: alagille@alagille.org
• Phone: 989.218.9028

Process:

• Connect with ALGSAccess team to discuss denial or access issue
• Receive guidance on next steps
• Obtain support documentation as needed