Being Rare……. Sometimes we look like everyone else, happy, busy people, socializing with friends, and helping others. Then sometimes we don’t. We wear masks to protect ourselves from others scent (strong odors/perfume). Wearing gloves at the playground. Stopping any activity…

  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…

This is my first blog post, so please bear with me. I am so excited and proud to be running the Boston Marathon this year for the National Organization for Rare Disorders (NORD). The picture above is my view as…

Cushing’s is a pretty brutal way of coming face-to-face with your vanity. Cushing’s syndrome is what happens if your body is exposed to excess cortisol. You can get Cushing’s by taking glucocorticoid medications (like Prednisone) for an extended period of…

Hello my name is Matthew Maderia. This is my first year on the Running for Rare Diseases team and I am training for my first half marathon. On Friday February 6, a few friends and I organized our second annual…

I was not born with a rare disease. I was a healthy, active, “regular” kid. I played hide-and-seek until the streetlights came on with all of the other kids in my neighborhood. I walked to school, played softball and basketball,…