08/28/2025
As Patient & Family Advocates, we know how painful it is to receive a diagnosis that changes the trajectory of you and your child's future. For our group of advocates, when the dust settled, we turned our pain into purpose. We determined the climb doesn't have to be as hard, and we started to build ladders that help future families climb a bit easier. We also realized how important it is to have support from other families in your time of grief.
A pediatric liver diagnosis doesn't have to define you or your child, and transplant doesn't have to be the final chapter of your pediatric liver journey. Join our cause!
Our aspirations as an advocacy group are:
1) To be able to provide doctor led, family focused, educational materials on rare diseases affecting our liver community.
2) Create better community support systems, and network together.
3) Help local communities become more aware of pediatric liver disease and its warning signs encouraging an earlier diagnosis.
4) Advocate for a better health system overall within our governing bodies.
If you are interested in joining our group to help future families afflicted with liver disease, please visit our webpage and reach out! We'd love to have you join our efforts! Let's work together to be a group that helps heal people 💕
