Session date: 
09/12/2024 - 2:15pm to 3:05pm
PRESENTATION TITLE
From Bedside to Bench and Back: How Patient Communities are Transforming Rare Disease Research and Driving Scientific Discoveries  
 
SPEAKER
Tania Simoncelli, MS
Chan Zuckerberg Initiative
 
LEARNING OBJECTIVES
  • Describe the evolution of patient advocacy over the last 25 years (e.g., a shift from more traditional advocacy focused on education and funding to organizations that are actively shaping and driving the research agenda)
  • Describe how patient communities are transforming the research landscape in rare diseases
  • Describe what more is needed to support and optimize the power of patient communities to accelerate research in partnership with researchers and clinicians.

ATTENDANCE / CREDIT
Text the session code (provided only at the session) to 507-200-3010 within 48 hours of the live presentation to record attendance. All learners are encouraged to text attendance regardless of credit needs. This number is only used for receiving text messages related to tracking attendance. Additional tasks to obtain credit may be required based on the specific activity requirements and will be announced accordingly. Swiping your badge will not provide credit; that process is only applicable to meet GME requirements for Residents & Fellows.

TRANSCRIPT
Any credit or attendance awarded from this session will appear on your Transcript.

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Presenter: 
Tania Simoncelli, MS
Additional presenter: 
Catherine Wurzer - Moderator
Support location: 
Minnesota

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Support location: 
Minnesota