The road from diagnosis to potential treatment for a rare disease is a troubling journey that is not well known and challenging to say the least. The foundation hopes to help families better understand the journey and process through educating and sharing our experience and others.
The in-depth article linked below provides enormous value in better understanding in great detail each stop in navigating a diagnostic and a therapeutic odyssey.
This is the journey that our foundation went on and helps provide insight in what we did to get where we are today!