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 we wanted to represent RFRD at NIH. As you can see with the photos it was a huge turn out . Many did not know of this program , but we made sure they left having a real sense of how it touches so many. My Mom designed t-shirts for us to wear and I made bracelets to hand out. They were all wearing the bracelets by the end of the day. I have a very rare disease and I do not have any organization or support group. This made it possible for me and my parents to finally be a part of something great!