A Marlow-based pharmaceutical company is raising awareness of a rare disease.
Kyowa Kirin International (KKI) is using digital photography and conceptual makeup design to shed light on X-linked Hypophosphataemia (XLH).
XLH is an inherited disorder characterized by low levels of phosphate in the blood leading to soft and weak bones which is usually diagnosed in childhood.
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The company will launch an immersive online exhibition on May 16 to coincide with the International Day of Light.
The team behind the art gallery included James Mac Inerney, a contestant on the BBC’s Glow Up: Britain's Next Make-Up Star.
He said that the stigma he has faced through living with Tourette’s syndrome, helped him to emotionally connect with the XLH patients.
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Annette, XLH patient and campaign participant, said: “I was hugely relieved when I finally got my diagnosis of XLH and confirmation that I was actually unwell.
"For many years I thought the universe hated me.
"It sounds horrible but that's how I felt.”
Around 3.5 million (or 1 in 17) people in the UK live with a rare disease and individuals still experience problems with diagnosis, co-ordination of care and access to specialists, as highlighted in the UK’s recent Rare Diseases Action Plan.
Abdul Mullick, president of KKI, said: “Diagnosis rates for those living with rare diseases continue to lag and we must do more to both raise awareness of rare diseases and improve diagnosis levels.”
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