Former Leeds Rhino star is having a 'transformational' effect on motor neurone disease patients and their families, says the MND Association
Rob Burrow with his wife Lindsey Burrow and Kevin Sinfield , with whom he raised more than £8m for MND support “What’s really important is Rob Burrow continues to live for ever. I’m sure the MND community and everyone who’s supported us previously will make sure that Rob’s name is at the forefront of everything we do going forward.”
Mr Evans said research into MND over the past 20 years has not led to the same number of breakthroughs as seen in many other conditions, which has been “deeply frustrating”., which has only extended life by a modest amount. What we have developed is a much better understanding of the biology of MND. We’ve put ourselves in a position where we understand what is happening more and, hopefully, we’re now on the precipice of making that big discovery.
Tofersen, developed by Biogen, is targeted to treat people living with MND who have alterations in the SOD1 gene – approximately 2 per cent of the MND population, estimated at 60-100 people in the UK. Ordinarily, products targeted to rare diseases that affect less than 1 in 50,000 people in England are appraised through the HST route, but NICE has confirmed it will conduct a standard appraisal on the basis that it does not view SOD1 MND as a clinically distinct disease.
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