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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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