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
Rare Disease Day
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
simondenegri.com 