Sunday, 28 February is rare disease day, which aims to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.Advertisement
It is estimated that 1 in 17 people will live with a rare disease at some point in their life.
Paralympian Jack Bridge from Preston lives with the rare disease Haemophilia A.
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Jack competed in the 2012 Paralympic games and is also one of the 17 changemakers for the ‘I am number 17’ campaign, helping to raise awareness of many challenges the rare disease community face.
He said: “My condition puts me at risk of bleeding in the joints or on the brain, however, I have never let haemophilia A stop me from swimming.
“I am proud to have represented my country in a sport where I was able to perform at my best.
“Lockdown has been a massive struggle. I’ve lost members of my family and my job. If it wasn’t for my friends and family staying in contact through FaceTime, it would have been an awful lot worse.
“I’m grateful to have wonderful people around me, and that’s what is important for me to remember.”
The ‘I am number 17’ campaign was created by Takeda UK at the start of 2020, together with 13 advocacy groups from across the UK.
At the forefront of the campaign are 17 ‘changemakers’, people living with a rare disease or supporting someone who has a rare disease, from across the UK.
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Each changemaker experience is unique yet, they share the common goal to raise awareness of rare conditions amongst the public.
The 17 changemakers are producing 17 different pieces of content, from blog posts, to podcast episodes, to poems, and Instagram Q+As.
They aim to highlight the care, treatment and support needs of patients, the lived experiences of people with rare conditions, diagnosis challenges and the disruption to care due to the pandemic.
To find out more about the campaign, click here.
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