If you have found this site, you are hopefully looking to organize your own rare disease awareness event! YAY!!!

This site is essentially a "Rare Disease Day in a Box" and can act as a guide to help you set up your event! Want to know the best part? The way it has been organized allows the events to occur ANYWHERE IN THE WORLD! Everything you will see on this site has been organized in a step by step fashion to help make everything super easy! 

Even though we have provided a general outline, feel free to be creative and put your twist on the week! We love seeing everything people are doing to help raise awareness and we want you to be able to find innovative, fun ways to host your event!

Julia is from Toronto, Canada and has a rare disease called Autoimmune Polyendocrinopathy Syndrome Type 1. This complex condition affects her immune system (and much more) and has made her spend years in hospital and miss school for appointments and admissions. Julia has been organizing rare disease awareness events at her school since grade 3 in order to raise awareness and encourage advocacy within the student body. Apart from being a rare disease patient, she is a huge biology nerd, loves music and animals and has played soccer for years.  She is currently a third year university student at Boston University studying Marine Science. She is super excited to welcome more people from around the world to the rare disease community!

Julia Finch is a junior at UC Berkeley in California. Her younger sister, Samantha (8th grade), has a rare disease that affects 1 in 2 million people called Autoimmune Polyendocrinopathy Syndrome Type 1. For the past few years, Samantha has inspired Julia to launch a rare disease awareness campaigns at her school. When she's not raising awareness for rare diseases, Julia loves to play basketball and surf.  She can't wait for you to join her on her awareness adventure!