GOSH Charity survey reveals half of the British population cannot confidently name a childhood rare disease

On Rare Disease Day, Great Ormond Street Hospital Children’s Charity have released figures that show over half of the British population are not confident they can name a childhood rare disease despite the fact that around five children die from a rare disease every day.

The online survey, commissioned by Great Ormond Street Hospital Children’s Charity with YouGov, asked people how confident they are in naming a childhood rare disease, only 9% were very confident that they could do so.

The charity is eager to raise awareness of childhood rare diseases as it is aiming to invest over £10 million over the next year to fund world leading researchers to push forward in their discovery of new treatments and cures. The charity is calling on the public for their support to raise critical funds to help progress life changing research at Great Ormond Street Hospital (GOSH) and at institutions across the UK. 

"For many, research is their only hope"

Kiki Syrad, Director of Grants and Impact at Great Ormond Street Hospital Children’s Charity, said: “GOSH treats a huge number of children with rare diseases and for many of these, research is their only hope. A third of children with a rare disease will die before their fifth birthday yet paediatric health research is severely underfunded, receiving only five per cent of charitable and public funding in the UK each year.

“We would encourage the public to support us and help enable the world leading researchers we fund to progress their research and help to improve outcomes for children with rare diseases.”

Rare diseases across the whole population are defined as a disease that affects fewer than 1 in 2000 people and approximately 6,000 diseases are classed as rare and can range from different types of cancer to heart disease, to muscle wasting diseases and can be present from birth or develop throughout life. 

Arthritis in the young

Infographics for Rare Disease Day 2019

The survey also revealed that people didn’t realise that medical conditions commonly associated with adulthood, can also affect children. Of the 2,072 people surveyed, over two thirds didn’t identify from a given list of rare diseases, that arthritis is a childhood rare disease. Juvenile idiopathic arthritis affects approximately 12,000 children in the UK. It causes pain, saps energy, leaves children fatigued and with swollen and stiff joints. Arthritis in young people is much more aggressive than arthritis in adults and can cause severe mobility issues.

It is hoped that research into arthritis will help more children like 15-year-old Amelie who has lived with juvenile idiopathic arthritis her whole life. Her mum Caroline comments: “Amelie has had a really tough time. For years she had frequent trips to GOSH for treatment that had incredibly unpleasant side effects like nausea and pain which meant she missed out on weeks of school and play dates with friends. We know that research is taking place right now that will look at finding new and kinder treatments that would give children like Amelie back their childhood.

"We would love more people to be aware"

“We have lost count of the number of times that people have said to us `but that is a disease that affects older people’. We would love more people to be aware that this debilitating condition is something that can affect young people.”

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