Three years ago, the first Duchenne Patient Academy (DPA) was launched in Athens, Greece. This global patient advocacy initiative was formed by the Duchenne Data Foundation to create a broader and deeper understanding of Duchenne Muscular Dystrophy (DMD) and coordinate the global advocacy strategy of the community. Last weekend, the third edition of this patient advocacy initiative took place.
Alongside a better understanding of the condition, this series of masterclasses aimed to equip patient organisations with the knowledge necessary to become experts on DMD and the advocacy needed to improve the lives of DMD boys and men. The sessions covered a broad range of areas, with the end goal of more effective advocacy in each participant’s home country, while simultaneously strengthening the global Duchenne network.
Although the concept remains the same, the 2019 edition was held on a much bigger scale. Over the scope of three years, Duchenne Patient Academy has evolved into a global initiative connecting Duchenne patient organisations from across the world. Over 80 participants from 37 countries converged on December 6 – 8 to redefine and set the path for the future of Duchenne patient advocacy together.
Over the years, Duchenne patient advocates throughout the world expressed an increased interest to connect and exchange knowledge and information. By sharing best practices and building upon each other’s ideas, a unified strategy emerged. This empowers patient organisations to facilitate the best care possible for patients and families in their country affected by Duchenne Muscular Dystrophy, but also to agree and promote the global advocacy strategy for the years to come.
Supported by an international team of expert trainers, in a series of plenary and break-out sessions, both next generation patient advocates and experienced patient leaders received training and updates in terms of research, care, clinical trials, advocacy, policy, funding, regulatory interactions and patient advocacy. Next to existing patient organisations, there was also an open call for new patient advocates that are in the process of setting up a patient organisation in their own countries
“Although this came too late for my son, I am grateful to be in in Duchenne Patient Academy. It’s both comforting and empowering to hear all those stories. I know that my grandson will receive much better care than my son and that makes me hopeful” – Josefine, Association Duchenne Chile
Duchenne Patient Academy is valuable not only for connecting global patient organisations, but also in identifying and addressing needs in terms of patient advocate education, states Dimitrios Athanasiou, board member of the World Duchenne Organization. “With the interactions during these three days, we are collecting input for the fourth edition of DPA. With this, we are well on our way to make the global Duchenne community not only the biggest but also the best educated rare disease community in the world.”