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Evesham Tower lights up to raise awareness of Rare Disease Day

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Evesham Tower lights up to raise awareness of Rare Disease Day
Rare Disease Day logo

Evesham Bell Tower will light up in pink, lime green and blue on 28 February to spread hope and solidarity across the world to raise awareness of Rare Disease Day.

There are more than 3.5 million people in the UK who are living with a rare disease. Raising awareness will help with diagnosis, improve access to treatments for many and improve inequality and isolation.

In 2019, Ailla Richards, from Evesham, was diagnosed with CASK gene disorder aged three-years-old. It was discovered after the family took part in a British initiative to sequence and study health and disease to provide answers to those suffering from a 'syndrome without a name'. Ailla, now six, is one of only 250 patients globally affected by this disease, which can have severe life-limiting consequences.

The lighting of Evesham Bell Tower will be one of a global 'Chain of Lights' taking place on Rare Disease Day. Thousands of events including building illuminations, fundraisers, sporting events, scientific conferences, art exhibitions, policy events and much more are taking place today in over one-hundred countries.

Emily Richards, Ailla's mom, said: "My daughter suffers from an ultra-rare genetic disease, and so this day means a lot to my family, and I'm sure other families in Evesham too. I often see Evesham Abbey lit up beautifully in remembrance and it makes me stop and think of others. I hope that other people will do the same on the 28 February. I want to thank All Saints Church for supporting this very worthwhile cause."

The Vicar of Evesham, the Revd Andrew Spurr, said: "Advances in genetic technology mean that we can now identify an increasing number of conditions which we could only dream of even ten years ago. The funding for this kind of research increasingly falls to charitable donations. We at the parish church are delighted to be able to raise the profile of Rare Disease Day, a sign of hope for families whose loved ones will benefit from the work it makes possible."

Residents are invited to light or decorate their home at 7pm on 28 February, take a photo and post it on social media using the hashtag, #LightUpForRare.

Ailla Richards

Note to Editors:

There are more than 7,000 rare diseases in the UK alone, rare diseases are believed to affect 3.5 million people. They disproportionately affect children and in 30% of cases, patients die before their fifth birthday, so new treatments are urgently needed.

Interactive world map of Rare Disease Day events: https://www.rarediseaseday.org/events/

Join the Global Chain of Lights: https://www.rarediseaseday.org/news/join-the-global-chain-of-lights/

Ways that you can join the Global Chain of Lights:

  • Play the #LightUpForRare video on your computer or smart TV to fill your room with vibrant Rare Disease Day colours
  • Get creative! Maybe you have some fairy lights stored in the attic or a colourful lampshade that you could use instead

 

What are the universal challenges faced by those living with a rare disease?

  • The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis.
  • The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
  • Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
  • Research needs to be international to ensure that experts, researchers and clinicians are connected.