Rare Disease Day – Westminster was Calling!

Rare Disease Day takes place on the last day of February every year to raise awareness about rare diseases and their impact on patients lives.

This year we launched the AS Community ‘Off the Record’ podcasts and our Chief Executive, Kerry Leeson-Beevers (pictured below on the right) headed off to Westminster!
She also met up with our colleague Sophie (pictured below on the left) from the Breaking Down Barriers Network.

This year, the Rare Disease Day reception welcomed the rare disease community from those with lived experience, organisations at the heart of this work and policy makers to discuss everything rare and the progress made to date and the areas which still need addressing.
Nick Meade, Interim Chief Executive from Genetic Alliance UK launched the Genetic Alliance UK Rare Disease Day 2025 report:
More than you can imagine: opportunities for improving the lives of people with rare conditions and More than you can imagine: an anthology of rare experiences.
You can find out more about this work on the Genetic Alliance website HERE
We also launched the AS podcasts – check them out on our dedicated podcast page https://www.alstrom.org.uk/podcast/