Collaboration with all stakeholders in a registry is key to moving education and research forward for things like early detection in BA for better outcomes in children.
This is one small, yet very important step in moving the needle forward on earlier detection and perhaps one day having care pathways that end far less frequently in transplant.
#biliaryatresia#pediatricliverdisease#bare
Community support can make a tremendous difference when caring for a child with a #raredisease. Interested in learning more about #biliaryatresia and connecting with other community members? Check out @BAREInc_org: https://t.co/DjEVm8QyGB
#awarenessday
Here I am facing one of those life altering decisions: Do I chance waking the baby and change his diaper or do I let him sleep and sacrifice my nostrils and endure what can only be described as something from the seventh ring of hell? I’ll miss you nostril hairs.