WGU to mark Rare Disease Day by supporting RARExham campaign
Date: Friday 24th February 2023
Students and staff at Wrexham Glyndwr University (WGU) are lending their support to a campaign aimed at shining a light on rare diseases.
To mark Rare Disease Day, which is taking place on 28th February, the university is joining forces alongside other local organisations to champion the RARExham initiative, which was created to highlight the impact rare diseases have on individuals and their family members.
RARExham is the brainchild of Mold-based community interest company (CIC), Same but Different, who use the arts for positive social change.
In a bid to help raise awareness, the university is hosting a photographic exhibition focussing on rare diseases and the impact they have.
Across the world, 1 in 17 people have a rare disease and 30 per cent of children diagnosed with a rare disease will die before their fifth birthday.
Nina Ruddle, Head of Public Policy Engagement at WGU, who leads the institution’s Civic Mission project, said: “On behalf of all at the university, I’m extremely proud to lend our support to RARExham – an incredibly special and vital initiative, which aims to highlight rare diseases.
“I have a personal connection to Same but Different as my family have been impacted by rare diseases. The support from the university and Same but Different made a huge difference to how we coped and continue to cope through an incredibly difficult time for me and my loved ones.
“To tie in with Rare Disease Day, we’re hosting a photographic exhibition highlighting their impact.
“Our support of the RARExham campaign reaffirms the university’s commitment to the Rare Disease Charter, which we signed up to in 2019. We are also delighted to be working with Same but Different to create learning content for our Children’s University, as part of our Civic Mission project.”
Ceridwen Hughes, Director of Same but Different, has personal experience of rare disease as her son, Isaac has Moebius syndrome – a rare condition that results from underdevelopment of the facial nerves that control some of the eye movements and facial expressions. The condition can also affect the nerves responsible for speech, chewing and swallowing.
Ceridwen said: “Many of the initiatives we do at Same but Different are based around amplifying voices of those affected by rare disease.
“From my son’s experience, I know how important it is to ensure people with rare diseases feel supported by the community in which they live, which is why we created RARExham. The idea is for people and organisations to show their support in any way they wish and come together under the banner of RARExham.
“I’d like to thank students and staff at Wrexham Glyndwr University for their amazing support of this important campaign.”
You can find out more about RARExham and how you can show your support by visiting www.rarexham.co.uk