Why we need to look at rare diseases in a different way

Woman looks at the camera with a sad expression.

Rare Disease Day aims to raise awareness of rare diseases and the impact they have on patients’ lives. But why is this important?  If rare diseases are rare, why should we be interested, make time to care, learn more or more importantly take action?

Critically, although we define individual rare diseases as rare, collectively there are around 7,000 which means that 1 in 17 of us will suffer from a rare disease in our lifetimes, equivalent to 7% of the population.

As Su Smith, Director of Origins Insights, explains, “although medics classify certain conditions as rare. For the people that live with the condition, they aren’t rare to them. They live with it, manage it and treat it every day.”

The lack of awareness and information, challenges to diagnose rare diseases, as well as the lack of effective treatments and support services mean those living with a rare condition can often feel isolated, marginalised and misunderstood. So maybe we need to change our perspectives of rare diseases and think about them differently.

“If we could see rare disease, and the understanding of the basic biology of rare disease, as a doorway, an opening to understanding much bigger healthcare challenges, and finding solutions and cures to a range of more common diseases, that’s really where rare could change the world,” is the forward-thinking opinion of Jo Balfour, Managing Director of the Cambridge Rare Disease Network.

To celebrate rare diseases and help raise awareness, Bedrock Healthcare Communications and Origins Insights have worked together to develop a short film, ‘What One Thing….’ to unover insights from the rare disease community including patients, providers, researchers, support networks and the pharmaceutical industry on the challenges, the changes needed and their hopes for the future. 

Commenting on the film, Marie Little, Managing Director of Bedrock Healthcare Communications says, “Curiosity is at the heart of our thinking at Bedrock. Blending this with insights, creativity and science means that we can help to improve the lives of people with rare diseases”.

To view ‘What one Thing’ please visit https://bedrock-health.com/rdd/

For more information about Bedrock Healthcare Communications please visit www.bedrock-health.com/

For more information about Origins insights please visit www.origins-insights.com/