The Great Ormond Street Hospital (GOSH) is both a pediatric hospital, treating many children with rare conditions, and a charity organization for patients like those they care for. They help bring awareness to rare conditions and fund research for innovative treatments. You can read some of their most notable impacts here.
On February 28th, 2019, rare disease day, GOSH released results from a survey they conducted examining the current level of awareness of pediatric rare diseases in the UK. While the results were sadly not shocking to many, they serve as yet another indicator that there is a general lack of knowledge about this issue and rare disease as a whole.
2,072 people completed the online survey. 9% of participants said that they were confident in their ability to name a single childhood rare disease. This data, when extrapolated, equates to way over half of the UK population admitting a lack of confidence.
Currently, 5 children in the UK die from a rare disease each day and a third of children with a rare diagnosis will not live past their fifth birthday. Yet many are completely unaware of the issue. Without awareness, there is no chance they will contribute to the cause.
Additionally, this survey found that most people are unaware that many conditions they have heard of affecting adults also affect children. For instance, Juvenile Idiopathic Arthritis affects 12,000 children across the UK. In fact, it’s typically more aggressive in children than it is in adult patients. However, most people only associate arthritis with adults, which not only severely limits understanding, but also severely limits funding for research of the pediatric condition. The survey indicated that 2/3rds of participants did not know that children could have arthritis.
GOSH plans to invest more than 10 million pounds in research for pediatric rare disease treatments this year. However, to accomplish this goal they need public support. If you would like to donate directly to GOSH, you can do so on their website.
Currently, each year research for pediatric health receives just 5% of charitable donations in the UK.
With improved funding, we can accelerate research for these rare pediatric conditions, and ultimately improve patient outcomes.
You can read more about GOSH’s charity work and this recent survey here.