We are thrilled to have partnered with Utah Rare for a special Utah Rare Teen Photo Shoot for a dozen of our amazing teens. “A day off” from doctors, therapy and appointments for our Angels. Hair, make-up & clothing stylists, lunch, clothes and meeting new friends… it was awesome. Using Rare Disease Day 2016 as a day to present these images, hear from the teens, their families, and doctors on what it is like to be a teen with a rare disease. Photos and speakers will be at the capitol for Rare Disease Day and at the Utah Rare Symposium. Please visit utahrare.org for more information. You can see more of their images and read their stories in the blog section of our website.
A special shout out to all of our sponsors that made this such a fantastic day!