The Duchenne Data Foundation has organised the fourth edition of the “Duchenne Patient Academy” that, due to the pandemic, this year will be held online.
The Duchenne Patient Academy has the aim to create a wider understanding of Duchenne Muscular Dystrophy (DMD) and coordinate the global advocacy of the community.
The event will take place on November 30th, 2020 and it will last a week, until December 6th, 2020.
The training is open to DMD (Duchenne Muscular Dystrophy) / BMD (Becker Muscular Dystrophy) patient advocates with selected days and to all NMD (Neuromuscular Dystrophy) patient advocates.
The aim of the training, by gathering DMD/BMD reality, is to build a durable chain in order to coordinate the global advocacy strategy of the community.
The key topics of the training programme are:
- Grassroots fundraising and impact investment
- How to prepare for clinical trials in your country
- An introduction to clinical trial research and development
- Including the patient voice in regulatory decision-making processes
- How to coordinate global policy
- Advancing a Patient Organisation to the next level
- Improving the family’s position in data collection
- How to engage and create a community for young people with NMD
- Research and care update
- DMD clinical trials and COVID impact
It is possible to apply until November 13th by filling in the form available here.
More information about the training can be found at the Duchenne Foundation website.