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Engaging a Community for Rare Genetic Disease: Best Practices and Education From Individual Crowdfunding Campaigns.

Romina Alicia OrtizSteven J WitteArvin GouwAna SanfilippoRichard TsaiDanielle FumagalliChristine YuKarla LantNicole LipitzJennifer ShepphirdFidelia B AlvinaJimmy Cheng-Ho Lin
Published in: Interactive journal of medical research (2018)
We found that social media played an important role in all campaigns. Specifically, a strong social media network, an active outreach process to networks, as well as engagement within the study all correlated with a higher success rate. Amplify Hope donors were more likely to support projects that were near their fundraising goals, and they found video far more effective for learning about genomics than any other medium.
Keyphrases
  • social media
  • healthcare
  • health information
  • quality improvement
  • primary care
  • mental health
  • single cell
  • genome wide
  • network analysis