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We appreciate that watching this drama may lead to challenging emotions or raise questions or…
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Pompe disease is a chronic, rare, genetic, progressive metabolic disease which results in severe…
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As well as awareness, the week is also designed to help those who don’t necessarily identify as a…
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CMT is a genetic condition of the nervous system that affects approximately 1 in every 2,500 people…
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I first got into volunteering while doing my degree in public relations. It was that classic case…
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Reviewing the impact of myasthenia gravis on caregivers
An important factor in NICE’s decision…
Your story
Finding something positive you can do is so important, especially when you’re living with a…
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Researchers often highlight the importance of teamwork. I worked in an academic environment for…
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Newborn babies in the UK are currently screened for nine – soon to be ten – rare, but serious,…
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UPDATE: On 24 May 2023, Roche published an update in which they stated that the FDA's final…