Specialised commissioning

NHS patients with rare genetic disorders to be fast-tracked to earlier diagnosis and specialist care

Hundreds of people with a range of rare conditions primarily affecting the central nervous system will be fast-tracked to diagnosis and specialist care, thanks to the launch of a pioneering new NHS service. Patients with inherited white matter disorders (IWMDs), also known as leukodystrophies, will now have rapid access to expert teams, increased virtual support […]

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NHS to offer licensed cannabis-based medicine to treat rare genetic condition

The NHS will be able to prescribe cannabidiol to patients with a rare, seizure-causing genetic disorder in England from today (Tuesday) after the National Institute for Health and Care Excellence (NICE) issued final guidance recommending its use. Around one in every 6,000 people suffer from tuberous sclerosis complex (TSC) that causes seizures, which severely affect […]

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NHS treats first patient with the ‘world’s most expensive drug’

A five-month old baby has become the first patient to receive a potentially life-saving drug on the NHS that can prevent paralysis and prolong the lives of children with Spinal Muscular Atrophy (SMA). Arthur Morgan, who was diagnosed with SMA earlier this month, received the one-off gene therapy at Evelina London Children’s Hospital on May […]

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NHS England strikes deal on life-saving gene-therapy drug that can help babies with rare genetic disease move and walk

A life-saving drug that can enable mobility in babies and young children suffering from a rare genetic condition will be available on the NHS, chief executive Sir Simon Stevens announced today. Zolgensma, which has a reported list price of £1.79 million per dose and is labelled the most expensive drug in the world, will be […]

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Landmark NHS deal to open up access to life-changing cystic fibrosis drug

From today thousands of NHS cystic fibrosis patients in England can benefit from a ‘transformative’ treatment for cystic fibrosis. NHS patients will be among the first in Europe to be prescribed Kaftrio, which significantly improves lung function, helping people with cystic fibrosis to breathe more easily and enhancing their overall quality of life. The treatment […]

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Update on PET-CT services in the Thames Valley area

Joint statement from NHS England and Improvement, Oxford University Hospitals NHS Foundation Trust, and InHealth. The NHS is committed to detecting more cancers earlier to save more lives. That means a major increase in scanning and diagnostics, so patients can easily access services like PET-CT scanning. To that end, NHS England and Improvement, Oxford University […]

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