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research participation in rare diseases

Understanding why people with rare diseases lose out on research may help those with other more common conditions @rarediseaseday

February 10, 2016 / simondenegri / Leave a comment

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

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Thanks for visiting my blog. I am the Executive Director at the Academy of Medical Sciences. NIHR National Director for Patients, Carers and the Public based at UCL. I was the NIHR National Director for Patients, Carers and the Public and Chair of INVOLVE from 2012 to 2019 and, before that, was the CEO of AMRC. I was awarded the OBE in the Queens Birthday Honours list in 2018. You can find out more about me on my bio available from the menu. The views expressed on this blog are my own.

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