Presented by
ALGSAcademy – Educational Podcast Series
The Alagille Syndrome Alliance presents ALGSAcademy thanks in part to generous grants from Mirum Pharmaceuticals and Albireo Pharma. ALGSAcadmy is an educational podcast series dedicated to providing current, in-depth information for ALGS families, caregivers and physicians.
This ongoing series will provide education and awareness for the greater ALGS community minimizing the knowledge gap that continually hinders quick diagnosis, ffective treatments and research initiatives.
ALGSAcademy will feature specialists in areas like Alagille 101, ALGS and Nutrition, Transplantation, IEPs for School Age Children, the Importance of a Rare Disease Registry, Alagille Syndrome and Heart Disease, Alagille Syndrome and the Kidneys, and much more.
“Community Involvement in Rare Disease Advocacy and Research” (click to listen)
“Navigating Rare Disease as an Adult” (click to listen)
“ALGSA COVID-19 Chat with Dr. David Piccoli” (click to view)
“Alagille and Transplant” (click to view)
If you have an idea for a podcast topic, please email alagille@alagille.org for consideration.
Video Resources
Measuring What Matters to Families Virtual Roundtable Meeting Day 1 (Video)
- Dr. Kathleen Loomes – Nutritional Considerations in Alagille Syndrome Loomes ALGS Roundtable Nutrition – 09 17 2020 v2 – PDF Slides
- Dr. Lauren M. Fussner and Muzna Gulamali, MSW – Emotional Health and Wellness: Resources for Caregivers and Youth with ALGS Emotional health and wellness: resources for caregivers and youth with ALGS Slides
- Ed Tucker, MD, Chief Medical Officer, Mirum Pharmaceuticals – Maralixibat – About Mirum & Maralixibat (PDF)
- Ron Cooper, President and CEO, Albireo Pharma – Odevixibat – Albireo – ALGSA – September 2020 (PDF)
