World Duchenne Organization Concludes Successful Duchenne Care Conference 2023

We are pleased to announce the successful conclusion of the Duchenne Care Conference 2023. This highly anticipated event, held online on June 7 and 8, brought together healthcare professionals, researchers, advocates, and people living with dystrophinopathies from 66 countries across the world. The conference focused on care for females with dystrophinopathies and provided updates on DMD/BMD care since the publication of the 2018 Care Considerations in Lancet Neurology.

The Duchenne Care Conference serves as a vital platform for sharing knowledge, facilitating collaboration, and advancing care and treatment for individuals with DMD. Through a comprehensive agenda featuring expert speakers in DMD/BMD research and care, the conference explored a wide range of essential topics relevant to the well-being of people living with DMD/BMD.

The conference recordings are now available via YouTube:

The 2023 edition of the Duchenne Care Conference featured esteemed speakers who are leaders in their respective fields. We were honored to hear from:

Females with Dystrophinopathies

• Prof Ros Quinlivan – Professor of Neuromuscular Disease, UCL Queen Square Institute of Neurology
• Dr Saskia Houwen – Rehabilitation physician, Radboud University Medical Centre
• Dr Karolína Podolská – Chief Operating Officer at Parent Project Czech Republic

Cardiology

• Prof Linda Cripe – Pediatric Cardiologist at Nationwide Children’s Hospital
• Prof Karim Wahbi – Cardiologist at the Institute of Myology and Cochin Hospital

Endocrinology in DMD

• Dr Jarod Wong – Paediatric Endocrinologist, The Royal Children’s Hospital Glasgow
• Dr Claire Wood – NIHR academic clinical lecturer, University of Newcastle
• Dr Natassja Billich – Principal Project Officer, School of Human Movement and Nutrition Sciences, University of Queensland

Newborn Screening (NBS)

• Prof Martina Cornel – Professor of Community Genetics and Public Health Genomics at the Amsterdam University Medical Center
• Prof Alessandra Ferlini – Professor in Medical Genetics, director of the Medical Genetics section at the University of Ferrara
• Niki Armstrong – MS, CGC. Senior Director, Community Research & Genetic Services at PPMD USA

Emergencies

• Prof Eugenio Mercuri – Professor of Pediatric Neurology, Gemelli Hospital Catholic University

Neuropsychology in DMD

• Dr Jos Hendriksen – Clinical (neuro)psychologist at Kempenhaeghe and Laurentius Hospital Roermond
• Dr Philippe Collin – Pediatric and Adolescent Psychiatrist at Kempenhaeghe and Katholieke Universiteit Leuven

 

The Duchenne Care Conference 2023 provided a valuable platform for attendees to learn from these esteemed speakers, engage in interactive discussions, and foster collaborations that will further improve the lives of those affected by DMD.

As an online event, the Duchenne Care Conference 2023 made it accessible to a diverse global audience. For those who were unable to attend the live sessions, we are pleased to announce that the recordings with translations are now available. These recordings can be accessed on our website and provide a valuable resource for healthcare professionals, researchers, and individuals interested in DMD/BMD care.

The World Duchenne Organization would like to express its gratitude to all the speakers, attendees, and partners who contributed to the success of the Duchenne Care Conference 2023. Together, we are making significant strides in advancing care and treatment for individuals with dystrophinopathies.