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 diseases
Less haste and more speed is better for research and better for patients
The Government has today announced an Innovative Medicines and MedTech Review, beginning in early 2015. The Minister for Life Sciences, George Freeman MP, has set out a bold vision for cutting drastically the time it takes to develop and give patients access to new medicines and innovation. This news release lays out the basic aims … Continue reading Less haste and more speed is better for research and better for patients
Research of rare quality
The Government's Office for the Strategic Co-ordination of Health Research (OSCHR) will at some point in the next few months publish its 'National Ambitions' for health research. Since communications has never been one of OSCHR's strengths it has been close to impossible to discern quite what this thing will look like, if and when it … Continue reading Research of rare quality
Simon Denegri's Lay Review 