Program

This year, the 8th edition of Duchenne Patient Academy will take place. The training for Duchenne and Becker muscular dystrophy (DMD/BMD) patient advocates takes place online on Friday December 6, and Saturday December 7 2024.

Over the course of 2 days, Duchenne Patient Academy attendees will listen to speakers and attend panel discussions moderated by experts in their respective field. As with last year, attendees have the opportunity to become involved in the dialogue and share their experiences.

Below you can find the draft agenda. Please note that changes in topics and speakers may occur.

 

Duchenne Patient Academy – Agenda

Friday December 6

16:00 – 19:00 Central European Time

  • Community building: The importance of creating a supportive network on a national and international level.
  • Drug development: Providing insight into recent advancements in therapies, with a panel discussion featuring company perspectives.
  • Standards of Care: Why it’s important to have Standards of Care in place, and what role patient organizations can play in this.

Saturday December 7

14:00 – 20:00 Central European Time

  • Research: Challenges in drug development.
  • Care: The role of patient organizations in implementing standards of care and guidelines.
  • Advocacy: Case studies on building patient communities.
  • Patient involvement in drug development: Discussing the patient role in regulatory processes.
  • Crisis communications: Strategies for managing communication challenges during crises.
  • Fundraising: Examples of sustainable funding to support advocacy initiatives.