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Home » Latest News » Celebrate Rare Disease Day 2022

Celebrate Rare Disease Day 2022

Celebrate Rare Disease Day 2022

Bridge McFarland LLP support Rare Disease day, which is an opportunity to raise awareness of the less common conditions that impact ordinary people.

What is a rare disease?

A rare disease is defined as a healthcare condition that “affects fewer than 1 in 2,000 people within the general population. Currently, there are over 6,000  known rare diseases and new conditions are being described through advances in genetic and medical science”

Because there are so many of them, even though they are individually rare, “1 in 17 people will be affected by a rare disease at some point in their lives. This amounts to 3.5 million people in the UK”

The majority of rare diseases currently have no effective treatment. That said “The UK has also made important strides in the treatments made available for rare disease patients. The Early Access to Medicines Scheme (EAMS) was launched in 2014 to give people across the UK early access to new medicines that do not yet have a marketing authorisation, when there is a clear unmet clinical need”

Rare diseases – when things go wrong

Sadly, even when we know a lot about the cause of a rare disease things can go wrong, sometimes leading to compensation for clinical negligence.

One of our team, Dr Darren Conway PhD  worked as a researcher in genetics before becoming a solicitor. That background knowledge proved to be vital when working for a client who had a child who was born with Fragile X syndrome, as a result of negligence. In that case the mother – who already had a son with this condition - had negligently been told that her unborn son would not have the genetic mutation that caused Fragile X Syndrome. That advice was incorrect, and she went on to have a second son with this debilitating condition. In this case she agreed compensation in the sum of £1.8million to look after him.

So, whilst we celebrate our (rare) differences it is worth remembering that we can all be affected when things go wrong in a medical setting.

If you, or a loved one are affected by clinical negligence then please do contact us for a no-obligation review. If we take your case on then we can offer a ‘no win, no fee’ funding arrangement.

https://www.rarediseaseday.org/

https://doi.org/10.1038/s41431-019-0508-0

https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework

https://www.bridgemcfarland.co.uk/meet-the-team/dr-darren-conway-phd