International training for neuromuscular patient advocates
ATHENS, Dec. 9, 2020 /Duchenne Data Foundation/ — Duchenne Patient Academy is a training platform offering patient advocates from the rare neuromuscular community an opportunity to sharpen their skills. Last Sunday, it has wrapped up their online 2020 edition. In total, 120 patient representatives from 52 countries joined the week-long training November 30 – December 6.
Now more than ever, the Duchenne, Becker and the wider rare neuromuscular community are looking for connectivity and guidance to survive. How can we create a stronger, more educated community? How can we keep sharing our learnings and experience using the newest technologies? Can we find ways to connect information to advance the field of science?
The Duchenne Patient Academy (DPA) 2020 offers practical answers to these increasing challenges posed by the pandemic. Sessions on finding alternative methods of fundraising, capacity building, and providing an update on clinical trials and COVID impact were followed by a discussion on drug development pipelines. Over the course of 7 days, DPA engaged the global community to explore new approaches and propose new frameworks for collaboration.
Duchenne Patient Academy is a great opportunity for DMD and BMD patient advocates, but is also an excellent choice for patient advocates from other neuromuscular conditions who wish to improve their skills. Participants will apply the skills and tools necessary to build knowledge and confidence for serving their community on issues that value the patient voice.George Paliouras, Chairman of the Duchenne Data Foundation
Connecting the global DMD/BMD community
Since its launch, the DPA has grown in participation every year. In total, 120 patient representatives from 52 countries joined sessions with 33 international experts. All shared their extensive experience in the field of research, data collection and -sharing, funding, policy-making and regulation, and much more.
Patient advocates covering broader or other rare neuromuscular conditions were invited to attend the first three days.
Duchenne Patient Academy was incredibly informative. Ullrich Congenital Muscular Dystrophy is an ultra-rare neuromuscular condition. It is a huge challenge to be seen and to initiate research to improve care and therapies. By including us in their effort to train patient advocates, Duchenne Data Foundation is giving us the skills to ensure the ultra-rare are not left behind.Dr. Alison Kay, Patient advocate & Lay Research Panel member for Muscular Dystrophy UK
“An unexpected outcome of DPA in a virtual format was that young adults with DMD signed up to follow the training as well” concludes Suzie-Ann Bakker, DPA’s programme manager. “Often, they are held back because of their difficulties to travel. This is a relatively new group joining the stage. It’s encouraging to see them take the time and have the motivation to learn more about the management of their condition.” She added that next year’s edition will probably be a mix of in-person and online participation opportunities.
Duchenne Patient Academy is an event organized with the support of PTC Therapeutics, Sarepta, Italfarmaco, and Roche.
About Duchenne Patient Academy
In 2017, 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 and Becker Muscular Dystrophy (DMD and BMD) and coordinate the global advocacy strategy of the community. Over the scope of three years, Duchenne Patient Academy has evolved into a global initiative connecting Duchenne and Becker MD patient organisations from across the world. For more information visit www.duchennepatientacademy.org.
About Duchenne Data Foundation
Duchenne Data Foundation is a worldwide collaboration between Duchenne Parent organisations in order to enhance the understanding of the course of Duchenne and Becker muscular dystrophy, the effects of treatments, the needs and preferences of DMD/BMD patients, and all other aspects relevant to the lives of DMD/BMD patients. For more information, visit www.duchennedatafoundation.org.
Contact: Suzie-Ann Bakker
Duchenne Data Foundation