Improving access to medications, supplements, and services is a priority need for families affected by ALGS. The ALGSAccess Program was created to combat private and government insurance denials for medical care, medications and supplements, equipment, and other needs. Through this program, patients can receive support letters which aid in appealing for approval of VA services, disability, and other needs where related to Alagille Syndrome. If you have questions or need to talk through a denial of coverage, please connect with us via the contact for to the right.
HealthWell’s Alagille Syndrome Vitamins and Supplements Fund is designed to assist eligible people living with Alagille Syndrome with the full or partial cost-shares associated with vitamins and supplements. We are committed to supporting the ALGS community
and the established guidelines around our covered product list are meant to focus on the areas of greatest need for the majority of people living with Alagille Syndrome. Please visit HealthWell’s website to locate the vitamins and supplements in the covered product list and the qualifications to enroll.
Medication Access Program (MAP)
The ALGSA, in partnership with Tanner Pharma, has created the Medicaiton Access Program (MAP) to help families in South America with partial assistance for their medication needs that are not covered by health insurance. As a new pilot program in late 2023, the program is currently offered to families in Brazil only at this time, with the intention of expanding to other countries in South America in 2024. Covered products includes many life-sustaining medications, vitamins, supplements, and formulas. To see the covered products, see the application for enrollment to assess the benefit to your family.
Applications open in early January and close in late April each year with award announcements in mid-May. Application materials will be available here each January for the academic year starting with fall term of each year.
In February 2015, the Alagille Syndrome Alliance (ALGSA) established the Alaina K Hahn Celebratory Scholarship in honor of Alaina K. Hahn, the daughter of Cindy Luxhoj, ALGSA Founder. Alaina was born September 30, 1990, with Alagille Syndrome and was the inspiration for the creation of the Alagille Syndrome Alliance. She passed away September 30, 1990, due to complications with Alagille Syndrome on January 15, 2015, when she was only 24 years old.
The Alaina K Hahn Celebratory Scholarship fund the education of high school graduates or GED credentialed recipients with Alagille Syndrome who are entering or enrolled in an accredited US university, college or vocational school and choose to pursue higher education in the human biological, medical, or health sciences field. The scholarship award is $1,000 for a single year and is renewable for a second year, subject to open competition with other applicants, for a total possible award of $2,000.
Alaina cared deeply about other children and adults who battle Alagille Syndrome. She talked, texted, and emailed her many ALGS friends daily and was constantly sharing advice and experiences with parents and patients through social media. She lived and breathed this disease, but never let it limit or define her.
A graduate in Human Physiology from the University of Oregon, Alaina was pursuing certification in Orthotics and Prosthetics with plans to obtain a Masters in O & P from the University of Washington when she died. This scholarship honors Alaina’s legacy.