Spinal muscular atrophy

Ross Lannon in a power chair wearing sunglasses in a brown shirt and grey jeans. He is stationary on a bridge that overlooks the sea and a coastal view with blue skies

Life Update: New Job & Breaking Comfort Zones – Ross Lannon

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Woman With SMA on Forbes’ Top 30 List: ‘Work Ethic Outshines Disability’ – SMA News Today

  From being a child actor to a…

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Groups Join Forces to Push for SMA Newborn Screening in Scotland – SMA News Today

As part of ongoing efforts to have all newborns in the U.K. screened for spinal…

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University of Oxford: First UK pilot study of newborn screening for spinal muscular atrophy launched in Oxford – India Education Diary

Oxford University is initiating a population-based newborn screening study in the Thames Valley. This study…

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First UK pilot study of newborn screening for spinal muscular atrophy launched in Oxford – University of Oxford

In the UK, every five days a baby is born with spinal muscular atrophy (SMA)….

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When Your Child Has Spinal Muscular Atrophy: Tools to Help You Cope – Healthline

  Learning that your child has spinal muscular atrophy (SMA)…

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Emirati girl with spinal muscular atrophy takes her first few steps at Abu Dhabi long-term care hospital – Gulf News

A therapist works with Ali, 6, and helps him communicate with visitors…

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Baby given months to live may now outlive parents – after receiving world’s most expensive drug – National World

  A baby given just…

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UK Expands Referral Criteria for Zolgensma to Heavier Children – SMA News Today

  The U.K. has expanded the referral criteria for…

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£1.8m drug gives Cheshire baby a second chance at life after terminal diagnosis – Cheshire Live

  A drug that cost £1.8m has…

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‘Miracle’ Cystic Fibrosis Treatment For Children on The NHS – NHS England

Hundreds of children are set to benefit from a ‘miracle’ treatment for cystic fibrosis, which…

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Top 5 Most-Read Spinal Muscular Atrophy Stories of 2021 – AJMC.com Managed Markets Network

The top 5 most-read spinal muscular atrophy stories of 2021 on AJMC.com covered a variety…

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How does the NHS decide who they pay to treat – and who misses out? — Daily Mail

The numbers are mind-blowing. In England alone, the NHS spends an average of £52 million…

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As trials lag on Risdiplam’s effectiveness in adults, the drug remains out of reach for many – ABC News

Eleanor, with her sister Kirsten (left) and mother Karen, wants Risdiplam to…

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NICE recommends risdiplam for spinal muscular atrophy – European Pharmaceutical Review

The National Institute for Health and Care Excellence (NICE) has published new draft guidance recommending…

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Gene Therapy Improves Muscle Function for Children With Spinal Muscular Atrophy – Technology Networks

Children with spinal muscular atrophy (SMA) carry specific gene defects which cause progressive muscle wasting…

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Ideal Therapy Aids Motor Skills and Breathing, Taken Orally: UK Survey – SMA News Today

Motor function and stabilizing or improving breathing — along with oral administration — are the…

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Significant boost for children with Spinal Muscular Atrophy as new gene therapy is approved for use in Ireland – Irish Medical Times

  Children’s Health Ireland (CHI), St James’s Hospital, and…

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Babies with SMA able to swallow with Evrysdi® treatment – European Pharmaceutical Review

Roche have announced positive data from its ongoing open label study, demonstrating the efficacy and…

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‘It really is a miracle drug’: Yorkshire boy with spinal muscular atrophy receives ‘most expensive drug in the world’ at Sheffield Children’s Hospital – The Yorkshire Post

Rosie-Mae Walton and Wes Powell with their son Marley as he recovers…

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