I once told a conference that it was my perception that rare disease communities were in a stronger position to put research at the top of the agenda; that patients, carers, clinicians and researchers found it easier to get around the table in these areas, were able to work more closely together and mobilise for … Continue reading Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday
genome sequencing
Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers
It is one of the boldest and most exciting initiatives in UK health research and care that I have witnessed. It's also happening at lightning speed. In the eighteen months since the Prime Minister announced the 100,000 Genomes Project to coincide with the NHS's 65th birthday in 2013, we have gone from almost a standing start … Continue reading Patient charter on genome sequencing is a call to arms to the NHS, charities and researchers