Duchenne Patient Academy

Global patient advocacy initiative to create a broader and deeper understanding of Duchenne and Becker Muscular Dystrophy and coordinate the global advocacy strategy of the community.

APPLICATIONS CLOSED

Effective global patient advocacy

Become an expert on BMD/DMD and be equipped with the advocacy needed to improve the lives of those affected.

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Online training

Join the global virtual training with global experts.

Certificate

You will receive an official certificate upon completion.

Apply Now

Applications are now open! Deadline November 13.

PROGRAMME

Duchenne Patient Academy

Improving the patient’s position in data collection

Julian Isla

How to build a research ecosystem in your disease

Nicoletta Madia

Community building, creating a common voice

Durhane Wong-Rieger

How to coordinate global policy

Jana Haberlova

Clinical trial readiness for healthcare professionals

Nefeli Panousi

Selection criteria for clinical trials centers for CROs

Annemieke Aartsma-Rus

Clinical trials update and the COVID impact

Karen Facey

Real-World Evidence – Why it is important for patient communities

ACHIEVEMENTS

Here you can review some statistics about Duchenne Patient Academy

COUNTRIES INVOLVED

PATIENT ORGANISATIONS

DPA GRADUATES

DEFINE GLOBAL PATIENT ADVOCACY

Join the intensive one-week course and learn about the science, policy, research, strategy and regulatory framework. Applications are now open!

SPEAKERS

Prof. Dr. Annemieke Aartsma-Rus

Professor of Translational Genetics at the Department of Human Genetics at the Leiden University Medical Center. She has been selected as most influential scientist in Duchenne muscular dystrophy in the past 10 years.

Dr. Jarod Wong

Senior research fellow and honorary consultant paediatric endocrinology at The Royal Hospital for Sick Children Glasgow. Specialises in bone development in Duchenne muscular dystrophy and endocrinology.

Elizabeth Vroom

Chair of the World Duchenne Organization, and president of the Dutch patient organisation Duchenne Parent Project Netherlands. Mother of a son (30) with Duchenne muscular dystrophy.