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

A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly

So here's my unsubstantiated personal theory. It is that one of the root causes of the problems besetting today's NHS' is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years.  From almost the day … Continue reading A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly

Details about ‘Rare Disease Day’ of Action – 28th Feb 2013

The following was sent to Rare Disease UK members and I thought I should pass it on as it explains what is happening and how you can get involved this year. All except the first link won't work as I am mobile but the first URL address will take you to where all this stuff is … Continue reading Details about ‘Rare Disease Day’ of Action – 28th Feb 2013

Making the EU work better for research charities

On the face of it you might think this a very Friday afternoon sort of article.  But, as a discussion of how European foundations operate in a research funding context, it is is extremely interesting.  The news peg for it is that plans are afoot by the European Commission to present a regulation for a European Foundation … Continue reading Making the EU work better for research charities