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Certificate

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Applications for Duchenne Patient Academy are closed.

DUCHENNE PATIENT ACADEMY PROGRAM

Please note: Timings are in Central European Time (CET). This agenda is subject to change. 

Tuesday Nov 30, 18:00 – 20:30 
Care
  • Challenges and opportunities in improving DMD/BMD care
  • Patients’ and carers’ experience of medical care for their rare disease
  • What patient organizations can do to improve care
Wednesday Dec 1, 18:00 – 20:30
Capacity & Policy
  • Mindsets and strategies for negotiation success
  • Professional communication
  • Navigating global policy
Thursday Dec 2, 18:00 – 20:30
Therapy Development
  • Why we aren’t having gene and stem cell therapy yet
  • The importance of publishing negative results
  • Improving the patient voice in therapy development
Friday Dec 3, 18:00 – 20:30
Data & Scientific Information
  • Contributing to collecting and connecting health data
  • Available tools to collect and connect health data
  • Organizing individual data return from clinical trials
  • Finding, following and understanding scientific information 
Saturday Dec 4, 15:00 – 19:00
Project updates
  • Various presentations
  • Returning individual clinical trial results back to patients
  • Patient preference on returning individual clinical trial data
  • The role of CRO’s in returning individual clinical trial data
  • Which tools are available to facilitate this?
Company updates to the community
  • Presentations and panel discussion
Closing ceremony

ACHIEVEMENTS

Here you can review some statistics about Duchenne Patient Academy

COUNTRIES INVOLVED
PATIENT ORGANIZATIONS
+
DPA GRADUATES

DEFINE GLOBAL PATIENT ADVOCACY

Join the intensive one-week course and learn about the science, policy, research, strategy and regulatory framework. The deadline for submitting applications is November 9.

What will you learn

Grassroots funding and impact investment

Clinical trial research and development

Global policy making and regulatory affairs

Data collection and registries

Patient voice in medicine development

PARTNERS