CHAPPER healthcare is helping to raise money for Moorfield’s Eye Charity in support of Rare Disease Day and to help fund vital research needed to diagnose rare eye conditions. We are joining patients and organisations around the world to raise awareness of rare eye diseases and celebrate advances in treatment.
As a company we have chosen to focus on rare eye diseases after hearing the story of two-year-old Leonard Motyl who lives with a condition called autosomal dominant retinal dystrophy. The inherited genetic gene mutation means Leonard’s vision is affected by sunlight and he is virtually blind when outdoors.
“There are four people in our family that live with the condition including Leonard and my husband,” explains mum, Magdalena.
“It’s difficult to explain what life’s like for them so anything that raises awareness of rare diseases can only be a good thing. We live in a society where people are tolerant but the more understanding there is, the easier it is for people living with rare diseases.”
Taking place on Wednesday 28th February, Rare Disease Day raises awareness of rare diseases and the impact on the lives of patients. It also helps to reinforce their importance as a public health priority.
There are 7,000 different types of rare diseases making up 25% of all human diseases. 50% of patients are children and sadly, 35% will die before their first birthday. Inherited gene defects account for 80%of rare diseases, many of which affect vision.
CHAPPER healthcare supplies medicine around the world and is focused on ensuring that patients with rare diseases have access to the treatments they need. The company is keen to find out more about the latest advances being developed.
“Rare is defined as less than 5/10,000 people suffering from a disease, but if all rare disease patients lived together in one country it would be the third largest in the world,” said Jonathan Chapper, CEO of CHAPPER healthcare.
“Advancements in research and gene technology mean our understanding of the causes of rare diseases is increasing and this is being translated into new treatments. It is a cause very close to our hearts and we are delighted to be able to support the valuable work of Moorfields Eye Charity and help families like Magdalena’s who are affected by rare eye diseases.”
Every 15 minutes, someone in the UK starts to lose their sight. The Moorfields Eye Charity helps to bring new treatments to patients with eye diseases faster than ever before. Working with its partners, the charity produces more research than any other eye hospital in the world and provides the best possible care for its patients.