My name is Noah Victoria I am 19 years old I was diagnosed with Abetalipoproteinemia, which is a rare metabolic disorder. This was my second year participating in Running for Rare Diseases as a patient partner. I must start off…

We had been trying to have children for almost 10 years and finally after 7 losses we were blessed with a beautiful baby girl named Noah Maria. She decided to come early no matter what the consequences would be to…

  Hi my name is Noah Maria Victoria and I am the patient part of Running for Rare Diseases. My wonderful partner is Jon Rayla !!!My parents and I recently participated in Rare Disease Day at NIH . We decided…