Avril Daly addresses the APPG on Rare, Genetic and Undiagnosed Conditions
Individually, each of our own national experts, researchers or hospitals are ‘leading lights’ for their specialisation, but we know by sharing this expertise and working together they can achieve more!
This promise ERNs offer us should not be jeopardised by fragmented collaboration or the backward step of creating silos of clinical practice and research. We cannot afford to diminish the intellectual capacity of ERNs, as this will result in the networks falling short of their ambition and potential, ultimately tempering their success to care, share and cure.
All 28 Member States can look back and be proud of creating ERNs to tackle the rare disease public health issue, based on voluntary cooperation between countries. This is just the start of the journey and demands the continued involvement of all our experts, to be the first, globally, to have successfully addressed rare diseases as public health challenges once and for all. That is our hope, the hope ERNs offer us.