Duchenne Patient Academy is hosting on November 30– December 6 an online training dedicated to patient advocacy. The training is open to Duchenne Muscular Dystrophy and Becker muscular Dystrophy patient advocates, with selected days open to all Motor Neurone Disease patient advocates who might be interested. It is of particular interest to: individuals affected by DMD/BMD, patient organizations, researchers, and clinicians.
Patient organizations from other neuromuscular conditions such as Spinal Muscular Atrophy (SMA), Limb-Girdle Muscular Dystrophy (LGMD), Facioscapulohumeral Muscular Dystrophy (FSHD) or NMD umbrella organizations are invited to join selected days of the program.
Some of the key topic that will be discussed 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 Organization 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
Applications are OPEN until November 13! For more information and to apply please click here