Stories and poems shared to amplify rare disease day 2025 "More than you can imagine".

This year I was lucky enough to attend the rare disease day event organised by the Genetic Alliance UK, which was held at the Terrace Pavilion in Westminster, hosted by Liz Twist MP and Peter Dowd MP. There were many in attendance from various charities all with a common goal of celebrating the day, but also recognising the efforts that are being taken to continuously improve the frameworks for rare diseases and amplify awareness.

The atmosphere was fantastic and it was a great platform for expressing to the wider audience just what life with a rare illness can be like, from the hospital visits, to the build up of medicines, to having fears and finding a way through it.

The event allowed us to get some further insight into others who are living with rare illnesses with a selection of poems and short stories, for the theme "More than you can imagine".

Here a few from some 60 plus submissions, with the contributors ranging from age 9 to 71, including those with rare conditions, their families, parents, partners, siblings, children, healthcare professionals and organisations.

If you would like to see more from the pieces put together by the Genetic Alliance UK, then you can do so by clicking this link: More-than-you-can-imagine-an-anthology-of-rare-experiences.pdf