New online center offers resources and support tailored to kids, teens and parents
Finding easy-to-understand information about pediatric liver diseases that even kids can relate to has been a challenge, that’s why the American Liver Foundation is launching a new pediatric liver disease information center. The new online resource features disease specific information, patient stories, videos, activities, and educational resources with new content to be added throughout the year to keep repeat visitors engaged. Visitors will be able to access the online site as a parent, teen or child to view age-appropriate information.
“Our new Pediatric Liver Disease Information Center will help create many of the tools and materials necessary to support the pediatric liver disease community nationwide,” said Lorraine Stiehl, Chief Executive Officer, American Liver Foundation. “We’re so grateful to our esteemed pediatric liver disease committee, comprised of pediatric families, caregivers and medical professionals, which helped us create valuable content to address the needs of this very specialpediatric community.”
“Over 30 years ago, my son was born with Biliary Atresia (BA). Back then we were on our own, trying to track down other families that were managing the care of a child with BA. It was an arduous process trying to gain as much knowledge of the trials and tribulations of this serious (and still unsolved) disease. This online resource is incredible and will support so many families,” said Allan J. Doerr, ALF board member and pediatric liver disease committee member.
Approximately 15,000 children are hospitalized each year in the U.S. with some form of pediatric liver disease.The new online resource is part of an overall Pediatric Information Center and Support Program which also includes a newly launched Life with Biliary Atresia and Beyond Support Group on Facebook, and a Life with Biliary Atresia Webinar Series featuring parents and children sharing their stories and covering topics such as Kasai procedure and transplantation, support networks, BA in adults, transitioning to adult care, nutrition and more. Families can register for upcoming webinars by joining the Facebook support group.
“The pediatric information center is a phenomenal, easy to access resource, and a significant step forward for the pediatric community. As both a BA patient and a physician in training, this center gives patients access to both necessary information and opportunities to connect with other patients and families facing the same diagnosis,” said Ahmad Anouti, MD, postdoctoral research fellow at the Digestive Diseases Department, UT Southwestern. Dr. Anouti was born with Biliary atresia and underwent a liver transplant at the age of 16 due to developing hepatopulmonary syndrome.
The new Pediatric Liver Disease Information Center and Support Program is made possible through generous support by Albireo Pharma, a rare liver disease company developing novel bile acid modulators.
For more information visit: liverfoundation.org/liver-diseases/pediatric-liver-information-center/
The American Liver Foundation is the nation’s largest non-profit organization focused solely on promoting liver health and disease prevention. The American Liver Foundation achieves its mission in the fight against liver disease by funding scientific research, education for medical professionals, advocacy, information and support programs for patients and their families as well as public awareness campaigns about liver wellness and disease prevention. The mission of the American Liver Foundation is to promote education, advocacy, support services and research for the prevention, treatment and cure of liver disease. For more information visit www.liverfoundation.org or call:1 800 GO LIVER (800-465-4837).