Suzie-Ann
Suzie-Ann Bakker
Press contact

Duchenne Patient Academy 2020: a leading worldwide patient advocacy event on neuromuscular conditions

DPA 2020
New study!

Understanding how neuromuscular diseases impact learning and working opportunities for patients and carers

Are you interested in sharing an online training on patient advocacy? The Duchenne Data Foundation organises its 4th edition of Duchenne Patient Academy, a capacity building programme taking place November 30th – December 6th online. Applications are now open!

Duchenne Patient Academy works in partnership with leading DMD patient organisations to set a strong patient advocacy base for patient organisations and the Duchenne and Becker community at large. We do this through connecting leading experts in their fields in a week-long intensive training and capacity building programme. By connecting the DMD/BMD world, we aim to contribute a unified and strong voice to coordinate the global advocacy strategy of the community.

Duchenne Patient Academy is open to DMD/BMD patient advocates, with selected days open to all NMD patient advocates who might be interested. It will be of particular interest to the following groups: individuals affected by DMD/BMD, patient organisations, researchers and clinicians. Patient advocates do not have to be connected to patient organisations. Attendees will be able to participate in networking opportunities and various parallel sessions according to their preferences.

Patient organisations from other neuromuscular conditions such as Spinal Muscular Atrophy (SMA), Limb-Girdle Muscular Dystrophy (LGMD), Facioscapulohumeral Muscular Dystrophy (FSHD) or NMD umbrella organisations are invited to join selected days of the programme. Please indicate the condition you are affected with or represent in the application procedure!

 

Connecting over 80 patient advocates from 37 countries throughout the world, the 2019 edition of Duchenne Patient Academy can be seen as one of the leading global Duchenne and Becker MD events. The DPA educational training aims to equip patient advocates with the tools, knowledge and experience to better represent and serve Duchenne and Becker muscular dystrophy in terms of research, care, policy-making, regulations and awareness.

Duchenne Patient Academy 2020 connects leading patient advocates in a week-long intensive training and capacity building programme. By connecting the DMD/BMD and the broader NMD world, we aim to contribute a unified and strong voice to coordinate the global advocacy strategy of the community.

Patient advocates accepted into the programme will benefit from expert speakers and participate in the global dialogue, receiving training in fundraising, science, policy, regulations, clinical trials, data and networking opportunities.  

*For more information, contact Suzie-Ann at suzieann@duchennedatafoundation.org

Related diseases
Fascioescapulohumeral muscular dystrophy
Limb girdle muscular dystrophy
Spinal muscular atrophy
Topics
Education
Neuromuscular
Patient advocacy