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We are delighted to announce that The Patient Group Handbook, edited by our founders, has been published! The book consists of 25 practical chapters about research and drug development in the rare diseases field, including:

  • How to set up and manage a patient group
  • How to engage with industry
  • Orphan drug legislation and adaptive licensing
  • Crowdfunding for rare diseases
  • How to navigate the regulatory process
  • Empowering children to become involved in the research agenda
  • Natural history studies
  • Statistical considerations


All proceeds from book sales go to Findacure’s charitable projects. You can view the full contents and purchase your copy (in both Kindle and paper format) from Amazon.[/two-third][one-third]width="254"[/one-third][/row]

The Patient Group Handbook

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