ALGS Publications and Texts
ALGS Publications and Texts
There are many great publications and resources pertaining to Alagille Syndrome. We can’t possibly list every one but want to list a vast array of topics under the Alagille Syndrome umbrella to get you started. This is an ever evolving list and we will continue to add to it as we build up our website. If you have Alagille publications or resource suggestions, please email Roberta@alagille.org.
- Management of Adults with Alagille Syndrome (August 2023)
- Alagille Syndrome: Current Understanding of Pathogenesis, and Challenges in Diagnosis and Management (January 2022)
- Impact of long-term administration of maralixibat on children with cholestasis secondary with Alagille syndrome (June 2022)
- Natural history of liver disease in a large international cohort of children with Alagille syndrome: Results from the GALA study (August 2022)
- Alagille Syndrome: Diagnostic Challenges and Advancements in Management (November 2020)
- Alagille syndrome mutation update: Comprehensive overview of JAG1 and NOTCH2 mutation frequencies and insight into missense variant classification (July 2019)
- Alagille Syndrome and Liver Transplantation (January 2010)
Alagille Syndrome Pathogenesis and Clinical Management
Chapter 14 – Alagille Syndrome from Section
II – Cholestatic Liver Disease (Jan 2021)
By: Angelica Bottaro
Angelica Bottaro is a professional freelance writer with over 5 years of experience. She has been educated in both psychology and journalism, and her dual education has given her the research and writing skills needed to deliver sound and engaging content in the health space.
Information for ALGS Patients and Families: https://livmarli.com
Information for Healthcare Professionals: https:// livmarlihcp.com
Mirum ALGS Resources: https://livmarli.com/support-and-resources/
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.