We’ve been published in the Guardian!

Sep 27, 2023

We are excited to announce our involvement with MediaPlanetUK on the Rare Disease Campaign 2023. The campaign launched last Friday in The Guardian and is also available to read online. We are thrilled to be featured alongside our friends at Genetic Alliance UK, Rare Disease UK, EURORDIS, Global Genes and more!

The aim of this campaign is to bring together and empower the rare disease community by raising awareness of those living with rare conditions. We are pleased to support this initiative, as campaigns like this are so important for raising the profile of rare diseases with the public.

As part of the campaign our CEO, Dr Rick Thompson wrote an article titled, “Rare disease patient organisations: how to help them drive change”. In his piece, Rick emphasises the critical role that patient groups play in supporting rare disease patients and their families. He highlights the need for increased funding in order to sustain these organisations, which serve as a lifeline for patients navigating the challenges of living with a rare disease.

The campaign will be distributed at events and meetings in the months following the launch and you can pick up a physical copy at the London Rare Disease Showcase on the 27th November 2023. Come along to network, connect and reflect on the advancements made in rare diseases around the UK. Secure your ticket now!