Maintaining a registry of individuals and family members living with a bleeding disorder to help researchers understand what it means to live with a bleeding disorder from the perspective of the people who are affected, their siblings, partners, and caregivers, with the ultimate goal to improve quality of life, identify research questions important to community members, and together contribute to finding a cure

'affect':35 'bleed':12,25 'caregiv':40 'communiti':55 'contribut':59 'cure':63 'disord':13,26 'famili':7 'find':61 'goal':44 'help':15 'identifi':50 'import':53 'improv':46 'individu':5 'life':49 'live':9,22 'maintain':1 'mean':20 'member':8,56 'partner':38 'peopl':32 'perspect':29 'qualiti':47 'question':52 'registri':3 'research':16,51 'sibl':37 'togeth':58 'ultim':43 'understand':17

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