The goal of this project is to capture the faces and personalities of individuals who either have a rare disease or are closely connected to someone with a rare disease. Our hope is that we can help educate people about the hidden challenges of rare disease as well as highlight and celebrate the strengths and interests of each individual.
- “If you want peoples’ perceptions to change, then it’s important to share your story. I hope my story will help people better understand rare disease and be more compassionate to others like me in the future.”
- “1 in 10 people have a rare disease. That challenges the definition of what normal is. Rare disease is a common human experience.”
- “I know how scary it can be to not know what’s happening to you and to have no name for what’s controlling your life. It can be a huge relief to just have a name and a diagnosis.”
- “It is hard for people to understand how debilitating it can be when you look fine. Rare diseases can make you feel isolated when the people around you do not understand the effects of the condition you are living with.”
- “I think it’s important for people to understand that MSS makes Jonah who he is today. He was fearfully and wonderfully made, and I would not change anything about him.”
- “We shouldn’t treat people with rare diseases any differently because of their conditions, but we should be understanding, sensitive, and supportive. The first step to that is awareness.”
- “I wanted to be a part of this project to share my story even though it's not a typical story. There are so many different experiences out there and everyone should feel like they are able to share their story.”