09:00AM, Saturday 21 May 2022
A Marlow-based pharmaceutical company is using the art of photography and make-up design to raise awareness of a rare disease.
Kyowa Kirin International (KKI) will be running a digital exhibition to raise awareness of X-linked Hypophosphataemia (XLH) which may lead to bone defects that can impair mobility.
This includes bone fractures, hearing loss, ligament and bone pains, and increased risk of infections such as spontaneous dental abscesses.
The immersive online exhibition launched on May 16 to coincide with the International Day of Light.
About 3.5 million (or 1 in 17) people in the UK live with a rare disease.
These individuals experience ‘an array of health inequalities’ from awareness to diagnosis, co-ordination of care and access to specialists.
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.
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.”
Find the exhibition at ShineALightOnXLH.com
Planning permission for 200 new homes on the outskirts of Hurst have been declined by Wokingham Borough Council.