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RARE DISEASE DAY: PIONEERING MEDICAL RESEARCH BREAKS DOWN BORDERS

Newlife Foundation for Disabled Children is marking worldwide Rare Disease Day www.rarediseaseday.org (February 28) with the announcement of £800,000 of funding for medical research into rare and disabling conditions.

To date, the UK’s leading children’s disability charity has funded around £12million of research into birth defects, with 25 per cent of all projects looking specifically at rare conditions, their diagnosis, management and treatment.

Newlife Medical Director Professor Michael Patton said: “Whilst individually rare, these conditions are altogether too common and affect thousands of families in the UK. Newlife is committed to funding pioneering research which especially targets the understanding and treatment of disabling and life threatening birth defects.”

Among the Newlife research grants announced today are projects looking at congenital retinal dystrophy and Coats disease, which are both causes of blindness in children. Another focuses on the inherited causes of blockage of the lymphatics which cause severe swelling of the legs or lymphoedema. There are also grants to support treatment of facial  deformity using stem cells and to screen for new drugs to treat kidney failure due to cystic kidney disease.

Three of the projects – focusing on stem cell treatment for congenital blindness, facial reconstruction surgery and gene mapping – will be based at the Newlife Birth Defects Research Centre at Great Ormond Street Hospital / Institute of Child Health in London. The centre, the first in Europe dedicated to birth defects research, was opened last autumn by HRH the Princess Royal.

Professor Patton added: “The work of our Newlife Birth Defects Research Centre will have a significant impact on our understanding and involve cutting edge research using the latest technology in genetics and developmental biology. This will continue to improve the ability to diagnose, treat and ultimately prevent many of these conditions.”

Rare Disease Day will see 60 countries around the world taking part in activities under the slogan ‘Rare Disorders Without Borders’. No individual country has the resources to understand and treat the 6,000 diagnosed rare conditions that exist, affecting more than 100million people. However, reaching out across these borders can help find common solutions – and the Newlife Birth Defects Research Centre will be an integral part of this work, not only in Europe but worldwide.

Newlife Medical Director Professor Michael Patton and the charity’s CEO Sheila Brown, OBE, will be attending a reception at Westminster today (February 27) for Rare Disease UK. The event will highlight the need for improved care and resources, something Newlife knows all about. The charity provides a range of practical support services for disabled and terminally ill children, including a national Nurse Helpline and equipment grants which have funded more than £8.2million of specialist disability aids.

For more details about Newlife Foundation’s investment in medical research – and the range of practical support services the charity offers to families of disabled and terminally ill children – go to: www.newlifecharity.co.uk.

Web: https://newlifecharity.co.uk Twitter: https://www.twitter.com/newlifecharity Facebook: https://www. facebook.com/newlifefoundation YouTube: https://www.youtube.com/NewlifeFoundation

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