We took over the UK airwaves!

by | Aug 19, 2022 | Blog, News

From Scotland and London to the South West and South East of England, rare diseases reached the ears of listeners across the UK.

Our rare disease charity in Cambridge, UK worked with the wonderful broadcast and radio PR agency, Relations Group Ltd, and Independent Media News (IMN) to bring the rare community’s message to the general public.

We knew that we couldn’t do this alone, so we teamed up with rare disease patient groups The Ectodermal Dysplasia Society (Diana Perry, CEO and founder), Wolfram Syndrome UK (Tracy Lynch, CEO and Founder) and The UK Mastocytosis Support Group (Jess Hobart, CEO and Founder) to share what it’s like to live with a rare disease pre-Covid and post-Covid.

The ‘The Rare Disease Patient Community for All’ campaign

reached 2.1 million people!

We’d like to extend a massive thank you to Anthony, Dave, Diana, Tracy and Jess for their generous time and effort. This campaign was only a success because of you. We hope that our collective advocacy helped the general public realise that rare conditions may be individually rare, but they’re collectively common. It’s time that rare diseases were viewed in the same manner as cancer – as one, single healthcare priority that society must address.

Watch our TV and radio interviews below to see what was discussed on local and national media outlets.

The jumping-off point for the campaign was highlighting that around 6 million people in the UK are currently on an NHS waiting list for pre-planned treatment as of June 2022. This is more than 1/10th of the population! In some areas such as Wales, it’s predicted the backlog could take up to seven years to return to pre-pandemic levels.

The government has promised to tackle the backlog in what they call ‘the biggest catch-up programme in the NHS’s history’, but with millions of people waiting for common treatments, what about those with the rarest conditions?

Listen now and let us know what you think on Twitter, Facebook, Instagram or LinkedIn!