PharmaVOICE Blog Post

How Social Media Can Be Used to Understand What Matters to People with Rare Diseases

Posted By: Dan Limbach
April 29, 2019

Evidera has released a white paper related to the January FDA revised draft guidance on rare and orphan drug development. The use of social media is recommended to help make the drug development process more efficient. This includes identifying rare disease patients for clinical trials, and learning more about the unmet needs, disease burden, opinions, treatments, side effects, and potential misdiagnoses of patients.

Read this informative white paper

 Key points in the paper:

  • Rare Diseases, Drug Development, Decision-Making, and the Patient Perspective
  • The Increase in Use of Healthcare-Specific Social Media Platforms
  • How Can Healthcare-Specific Social Media Help?
  • Case Studies: Using Social Media to Understand Patient Experience of Acute Myeloid Leukaemia
  • Strengths and Caveats of Utilizing Social Media in Rare Disease Research

Read this informative white paper

About the Blog Poster: Dan Limbach

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