04/03/2026
Saturday the 28th of February marked Rare Disease Day. This is a global event that raises awareness and generates change for the 300 million people worldwide who are living with a rare disease.
Many BCT clients will live with rare diseases, and this can create unique challenges. When you live with a rare health condition or disease, you can’t guarantee that medical professionals will have any answers for you. Sometimes, you are the first person they have seen with the condition, and that’s if they’ve even heard of it at all!
For those of us living with a rare disease, life goes on. It can be easy to reduce us to something rare and unusual, and I often feel like a specimen or curiosity when I attend a hospital appointment. However, more than this, I and everyone else living with rare diseases are people. We have goals and interests just like everyone else and, like every other blind and visually impaired person, we require fair and equitable access to the opportunities that will allow us to live full lives.
One of my goals in my role at BCT is to create these equitable opportunities, and to help clients access services and systems that so often feel impossible to navigate. When you have access to your community, whether in the geographical sense or to other blind and visually impaired people, you have access to the sense of belonging that so many others take for granted.
Living with a rare disease can feel isolating, but it shouldn’t. The problem isn’t that we happen to have a rare genetic profile, it is that almost every aspect of our society is built around what is common and expected. I was delighted that the theme for Rare Disease Day this year was equity. For Rare Disease Day to change anything, I truly believe it must move away from awareness to creating structural change. Equity and justice means shifting the focus away from the individual body and towards collective responsibility, so that a rare diagnosis never again prevents a person from accessing a full and ordinary life.
Connor Scott-Gardner, BCT’s Young People’s Advocacy and Engagement Officer
