The World Duchenne Organization and Duchenne Data Foundation are happy to announce the successful conclusion of Duchenne Patient Academy 2023. The training was taking place November 30 to December 2 in the city of Athens, Greece. Twenty highly motivated patient advocates from across the globe joined this interactive training.
Duchenne Patient Academy 2023 saw 20 passionate Duchenne and Becker MD patient advocates from around the world come together for an immersive experience. Dedicated to advancing research, advocating for access, and improving standards of care for Duchenne and Becker patients, the participants underwent intensive training on key aspects crucial for making a meaningful impact in the field.
Day 1: Thursday, November 30
The first opening day of the Duchenne Patient Academy 2023 commenced with a warm welcome and icebreaker exercise, setting a collaborative tone for the event.
Research 101: The morning focused on Duchenne research, featuring Prof Annemieke Aartsma-Rus providing an overview, followed by Kelly Guiver’s insights into statistics and practical applications. The session concluded with a Q&A moderated by Elizabeth Vroom.
Company Updates: After a refreshing coffee break, the program shifted to company updates. This included an introduction by Prof Annemieke Aartsma-Rus and a detailed update on clinical trials and treatments. A panel discussion moderated by Prof Annemieke Aartsma-Rus provided further insights.
Education to Promote Care & Inclusion: Thirdly, the afternoon delved into education, care, and inclusion. It covered topics such as the role of patient organizations, company presentations on educational programs, and discussions on the Accredited Duchenne Centers program, the Duchenne Care Conference, and DMD Emergency Program.
The day concluded with a social dinner, fostering connections among participants, speakers, company representatives, and the DPA team.
Day 2: Friday, December 1
Day two continued with a focus on regulatory pathways, clinical trial readiness, access to care, and standards of care.
Regulatory Pathways: The morning session was moderated by Dimitrios Athanasiou. It explored medicine approval processes, health technology assessment, and the value of patient-generated data in a case study on Duchenne Muscular Dystrophy (DMD).
Clinical Trial Readiness: Subsequently, the program shifted to clinical trial readiness, covering what companies look for in trial sites, preparing care centers, and the crucial role of patient advocates. This session and subsequent panel discussion was moderated by Dr Karolína Podolská.
Access to Care and Standards of Care: Last, the afternoon sessions delved into the successful implementation of care standards. It featured roundtable discussions on overcoming care implementation challenges with Nicoletta Madia. Lastly, this session was followed by presentations on telemedicine, staying updated on care considerations, and forming partnerships.
Day 3: Saturday, December 2
The final day had a focus on global advocacy, training on negotiation and influencing skills, interactive workshops, and a celebration of achievements. This part of DPA was moderated by Elizabeth Vroom and Nicoletta Madia.
Global Advocacy: The morning commenced with insights into the landscape of global advocacy. This was followed by discussions on how patient advocates can influence drug development, and an in-depth training session on negotiation and influencing skills.
Interactive Workshops: Secondly, participants engaged in an interactive workshop led by an expert on communication and fundraising. Participants were getting into smaller groups to work on a digital campaign regarding Care, Rights or Research. The plenary presentation showcased the outcomes of each group.
The event concluded with a celebratory wrap-up. Here, trainees received a certificate by Elizabeth Vroom and Nicoletta Madia, followed by a group picture and a well-deserved lunch. Chair of the Duchenne Data Foundation George Paliouras closed this year’s training for DMD and BMD patient advocates.
To conclude
In conclusion, Duchenne Patient Academy 2023 empowered participants with knowledge and skills. The goal of fostering collaboration and DMD/BMD advocacy is certainly achieved. We are looking forward to continuing the collaboration with these participants, ensuring a strong united voice for DMD and BMD advocacy.
For more information, please contact
Suzie-Ann Bakker
DPA Program Manager
[email protected]