“After four months of weekly appointments trying to investigate why Harper’s body seemed to be getting weaker by the day, we were given a terminal diagnosis of Spinal Muscular Atrophy … READ MORE

“Hello! My name is Eric and I was a problem child. At seven years-old, having already had a track record for giving my teachers gray hairs, my parents submitted me … READ MORE

“Our rare patient story starts at the end of October 2019 when our second born Morgan was born and finding out five days later from her newborn screening she had … READ MORE

“Project Sebastian was started by the father of a young boy who was misdiagnosed in the beginning of their journey. Sebastian was diagnosed with epilepsy, then started losing his vision, … READ MORE

Did you know that there are over 300 million living with a rare disease worldwide, and approximately 30 million in the United States alone? Just in time for #RareDiseaseDay, Rare … READ MORE