Promoting public awareness of the interests of patients and caregivers in the rare disease community by collecting information and issuing a large-scale study tracking the evolving experiences of those impacted by rare diseases, with the purpose of shaping medical care, informing national and local policy decisions, and supporting increased access to resources to improve quality of life

'access':52 'awar':3 'care':42 'caregiv':10 'collect':17 'communiti':15 'decis':48 'diseas':14,35 'evolv':28 'experi':29 'impact':32 'improv':56 'increas':51 'inform':18,43 'interest':6 'issu':20 'larg':23 'large-scal':22 'life':59 'local':46 'medic':41 'nation':44 'patient':8 'polici':47 'promot':1 'public':2 'purpos':38 'qualiti':57 'rare':13,34 'resourc':54 'scale':24 'shape':40 'studi':25 'support':50 'track':26

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