December 8, 2022 – Duchenne Patient Academy successfully concludes 2022 edition. The World Duchenne Organization and Duchenne Data Foundation organized another highly anticipated training for patient advocates. Duchenne Patient Academy provides training and education opportunities for people involved in patient advocacy for people living with Duchenne and Becker Muscular Dystrophy (DMD and BMD).
The 2022 edition was taking place online, convening over 70 attendees from 43 countries over the span of three days. The program consisted of 6 sessions, each co-developed by experts in their respective fields. Dedicated panel discussions were moderated by the key speaker, guided by the participants’ questions and comments.
“We thank Duchenne Patient Academy for such an excellent training session, it was so enlightening. The discussion was filled with so much knowledge. The training content has tremendous value, and this value will support us greatly. I would like to sincerely thank them for this excellent training.” – Duchenne Patient Academy participant
December 1: Research & Innovation
At first, Prof. Annemieke Aartsma-Rus kicked off the 2022 edition of Duchenne Patient Academy by a session dedicated to Research. A keynote presentation on therapeutic approaches was followed by a series of clinical trial updates, and a moderated panel discussion with representatives from pharmaceutical companies.
Secondly, Nawel Lalout chaired the poster session. Here, innovative projects related to Duchenne and Becker were presented that are not related to medicines. Posters that were presented included innovations in care accreditation, FAIR patient-led registries, video assessments, and wearable assistive technologies.
December 2: Advocacy & Networking
In the third session, Elizabeth Vroom moderated the talks considering advocacy. Participants learned how and where to optimize patient advocacy by learning from various models, approaches, and collaborations. Case studies were presented such as the Telethon model. Nicolas shared a story about how two Chilean patient organizations decided to merge. Fun fact: they met each other at Duchenne Patient Academy 2019!
Subsequently, the fourth session focused on Networking. Dimitrios Athanasiou invited speakers to share their insights on how to engage with, and add value for each stakeholder group. This included clinical networks, policy-makers, regulatory and HTA bodies, and actors involved in drug development.
December 3: Care Management & Allied Therapies
On the last day of Duchenne Patient Academy, Dr Karolína Podolská moderated the session on Care Management. She presented what patient organizations can do to implement the latest Standards of Care and Guidelines in Duchenne. In addition to this, talks on how to keep the medical community up to date, a patient perspective on gender specific medicine, and the Accredited Duchenne Center Program were given.
Last but not least, in the last session Allied Therapies, Dr Imelda de Groot, who recently extended the deadline for her Award for innovative care projects, presented on the importance of involving allied therapists in Duchenne care. Following this presentation were a series of talks about specific areas of allied therapies. Topics included accessible sports, brain training, and speaking and swallowing.
To conclude, Elizabeth Vroom looks back on a fruitful Duchenne Patient Academy. She said:
“This is such an important step forward for the global Duchenne and Becker community. We know how important education and networking is for our organizations, so to have this training with some of the top experts in their fields is exciting. The Academy is a game-changer for Duchenne patient organizations and we are already looking forward to the next edition.”
Undoubtedly, Duchenne Patient Academy proved to be essential in convening patient representatives. Sharing experiences and connecting with a network are key in creating a strong and tightly knit community. Suzie-Ann Bakker, Program Manager, added:
“With Duchenne Patient Academy, we are in a better position to help the community advocate the best they can for people living with dystrophinopathies. I am also pleased that we are strengthening new and existing links with patient organizations – each year, the mesh of patient advocates grows bigger and more connected.
About Duchenne Patient Academy
Duchenne Patient Academy is a collaboration between the World Duchenne Organization and Duchenne Data Foundation. Upon the launch of the first edition in 2018, Duchenne Patient Academy has trained over 500 patient advocates from 55 countries. Over the course of multiple days, patient representatives receive training and education on how to successfully advocate for people living with dystrophinopathies.