Scientific Meeting on Alagille Syndrome and Research Round Table Event
The International Symposium on Alagille Syndrome event is in-person every other year and virtual in the off years. While in-person, we take the opportunity to bring together brilliant minds in Alagille Syndrome and host a very prestigious scientific meeting with ALGS experts and up and coming scientists and researchers in the Alagille Syndrome field. The first scientific conference focusing specifically on Alagille Syndrome titled, Alagille Syndrome – New Research, New Hope, was hosted by Duc Dong Ph.D., at the 8th Annual SBP Rare Disease Day Symposium in 2017. Since that time the ALGSA has hosted scientific meetings in 2019 and 2021, planned and organized by Stacey Huppert, Ph.D., and Dr. Kathy Loomes, in advance of the ALGSA Research Round Table and International Symposium on Alagille Syndrome. We are grateful to all those who have made the ALGS Scientific Meeting a success year after year and look forward to many more. Our next scientific meeting and research round table event is planned for 2025 – details TBD. ADD NAMES AND CORRECT DATES OF OUR SCIENTIFIC MEETINGS AND IMPORTANT LINKS. Research Round Table event includes patients and families, ALGS expert doctors, scientists and researchers, pharma and biotech executives, and more sitting around the tables together talking through challenges that patients and families experience. Discussions include what their needs are, areas of research they think will positively impact day to day life, while listening to one another and their viewpoints. It’s an unforgettable and extremely impactful event that motivates and inspires all in attendance. “ROUND TABLE QUOTE HERE” Measuring What Matters ALGS Community Survey Results that inspired 2019 Research Round table event:
Link to Measuring What Matters (2019)
Link to For Every Body (2021)
Learn more about the International Symposium on Alagille Syndrome, here: LINK
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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.
Questions? Email: alagille@alagille.org