For families struggling with pediatric liver disease, few resources and support options exist, until now. The American Liver Foundation (ALF) is tackling the problem head-on with the creation of a new Pediatric Liver Disease Information Center and Support Program. The new program will focus first on Biliary Atresia (BA), a rare disease at birth causing damage, scarring and blockage of the bile ducts. BA affects 1 in 8,000 to 1 in 18,000 live births worldwide. About 10-20% of infants with biliary atresia have abnormalities in other organs, such as heart defects or issues with their spleen.
“Approximately 15,000 children are hospitalized each year in the U.S. with some form of pediatric liver disease,” said Lorraine Stiehl, Chief Executive Officer of American Liver Foundation. “For parents struggling to make sense of a life-threatening diagnosis like Biliary Atresia, finding support and resources is critical early on in a child’s journey and it’s also equally important that children and teens living with BA have a support system in place to connect with their peers.”
The Pediatric Information Center and Support Program includes a newly launched Life with Biliary Atresia Support Group on Facebook, a monthly 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, and an online information center launching this fall.
“When we were told my son would need a liver transplant and had Biliary Atresia, I needed answers and information quickly, so I turned to American Liver Foundation for help,” said Liz Leesmann, mom and living donor to son, Alexander, and national board member for ALF. “It can be an incredibly scary time for parents when a child is diagnosed with a life-threatening illness and having someone with the knowledge and resources available to help made all the difference to us. I encourage all parents of children with BA to join our support group and upcoming webinar to share stories, meet with experts and find support.”
The first Life with Biliary Atresia webinar will be held on Wednesday, May 4th at 2:00 pm ET and is open to all members of the Life with Biliary Atresia Support Group, to join visit facebook.com/alf.ba.families.
The online Pediatric Liver Disease Information Center, coming this fall, will feature disease information, patient stories, videos, graphics and an educational toolkit. Visitors will be able to access the online site as a parent or as a child to view age-appropriate information. This effort will help create many of the tools and materials necessary to support the pediatric liver disease community nationwide.
The new Pediatric Liver Information Center and Support Program is made possible through generous support by Albireo Pharma, a rare liver disease company developing novel bile acid modulators.
Last updated on October 10th, 2022 at 11:18 am