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I am pleased to share to with you my letter-to-the-editor from the Feb 20th, issue of NEJM (p 781). I responded to a Nov 14th, National Heart, Lung, and Blood Institute...

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Education

Rare disease stakeholders are a diverse group, each having very specific educational needs.  Churchill's clinician-educators possess expertise in translating bench science into practical, useful information effective in improving patient ouctomes.  Every program is evidence-based, measurable, and designed to answer questions about rare diseases and the role of new therapies:

  • Structured feedback advisory boards
  • Continuing education programs
  • Clinical symposia
  • Patient-oriented therapeutic administration training programs
  • Print and web-based training programs

Advocacy

Rare disease advocacy groups are vibrant, influential communities of providers, patients, and caregivers.  Offering information, support, and a shared voice, these groups can facilitate access to difficult-to-reach patient populations.  Churchill partners with advocacy groups to enhance patient recruitment, collaborate on educational initiatives, and develop best practices guidelines.

  • Disease management programs
  • Web-based patient communities
  • Patient recruitment
  • Best practice surveys and guidelines
  • Patient registries
  • Collaborative educational initiatives
  • Scholarship programs