How rare diseases can impact mental health
Mental health is fast becoming recognised as the missing piece of the puzzle in rare disease support
Rare Diseases 2019
A rare disease is one that fewer than five people in ten thousand have, but really they are not that rare after all. In fact, one in seventeen people suffers from a rare disease although progress with funding, treatment and diagnosis remains sluggish. The Rare Diseases special report, published in The Times, covers how the isolation of a rare disease diagnosis can impact mental health and how patients in rural areas and developing countries are struggling with limited access to support. It examines how genetic screening of newborns can catch rare diseases early and how at-home DNA kits can speed up diagnosis. Also featured is comment on how we must embrace our genomic future as well as an exploration of the factors which led a group of desperate parents to set up the Cystic Fibrosis Buyer’s Club
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In this report
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Why buyers’ clubs are the last option for desperate families
How an ongoing pricing battle between the NHS and an American biopharmaceutical giant led to a buyers’ club for cystic fibrosis drugs in the UK
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Ultra-rare disease diagnosis is an uphill battle
Incredibly uncommon and hard to diagnose and treat, how can we advance the treatment of ultra-rare diseases if there are still so many unknowns?
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How better genetic screening could save babies’ lives
Babies are tested for a number of conditions soon after birth, but varied approaches to screening worldwide highlight how fragmented the medical profession remains over this vital process
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New possibilities for people affected by genetic diseases
Gene therapy is becoming a treatment option for people diagnosed with certain rare conditions, says Nicola Redfern, UK general manager of bluebird bio, which is developing treatments for genetic diseases and cancer
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AI company offers hope for rare disease patients
Finding a treatment for a rare disease can be a lifetime’s mission, while funding it is always an act of faith few can attain
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Working together to bring hope to more patients with rare diseases
NICE review offers a chance to improve access to medicines and treatments
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Engaging with patients and experts to develop new drugs
Biotechnology companies engage with specialist firms to develop treatments which could transform the lives of sufferers from rare diseases
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The future is now: Orchard’s potentially curative gene therapies
A wave of innovation is delivering breakthrough treatment options for rare inherited diseases that were once considered too challenging or impossible to treat
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Driving innovation in treating rare diseases
The availability of new medicines is a hot topic within the healthcare profession. Everyone has their own issues from market access to pricing, reimbursement to efficacy. When the lens is focused on rare diseases the issues are hugely exacerbated
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AI for Business 2021
Is artificial intelligence really as transformative as claimed? Yes, says mathematician and broadcaster Hannah Fry, but not in the ways we might think. Our AI for Business report explores how AI can help save retailers from stock shortages, how the government’s new national strategy could make the UK an AI superpower and whether or not we can really teach machines how to imagine
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Digital Learning 2021
What will a hybrid model of digital learning look like? How can you get the most out of the time you spend learning online? This report offers advice on how to incorporate digital learning in the classroom and in the workplace. We also look at the most effective strategies for making sure the knowledge sticks.
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Climate Change 2021
As we inch closer to COP26 in Glasgow this year, companies are starting to get serious about their part in tackling climate change. Our Climate Change report explores how SMEs can reach net zero, whether carbon offsetting is a good idea and why it might be time to ditch GDP as a way to measure how well a country is performing
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Digital Transformation 2021
After 18 months of rapid digital transformation, questions are now being asked about how many of the changes implemented will last as the world reopens. Our Digital Transformation report explores how to measure performance, why embracing corporate digital responsibility is crucial and whether people really are the secret to transformation success