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Duchenne Care Conference 2024

Duchenne Care Conference 2024 successfully concluded

The Duchenne Care Conference 2024, organized by the World Duchenne Organization, brought together healthcare professionals and patient organization representatives. This year’s event saw a remarkable turnout, with 700 registrants hailing from 72 countries. The conference, conducted online, provided a comprehensive platform for sharing the latest advancements and best practices in the care and management of Duchenne Muscular Dystrophy (DMD).

The two-day event featured informative sessions led by top experts in the field. Each presentation delved into crucial aspects of Duchenne care, and included an interactive Q&A session moderated by Dr. Karolína Podolská.

 

Agenda and speakers

Highlights from the first day included Prof. Nathalie Goemans discussing the early signs of Duchenne Muscular Dystrophy, followed by Dr. Jana Haberlova’s session on the various corticosteroid treatments available for DMD. Dr. Jos Hendriksen addressed the importance of screening for brain comorbidities, and Prof. Imelda de Groot provided insights on optimal seating and positioning strategies. Dr. Agnieszka Sobierajska-Rek emphasized the significance of respiratory physiotherapy, while Dr. Natassja Billich and Dr. Zoe Davidson presented their pilot on delivering nutrition care remotely. Prof. Raja Padidela concluded the day with a presentation on bone health and puberty in DMD patients.

Agenda Duchenne Care Conference

 

The following interpretations are available:

The second day opened with Prof. Annemieke Aartsma-Rus offering a global perspective on currently approved drugs for DMD. Dr. Kristy Iskandar highlighted the use of air stacking to improve pulmonary function, aiming to bridge the Standard of Care gap in low- to middle income countries. Dr. Zvonimir Bebic covered pain management strategies. Prof. Denis Duboc presented the progress and future directions in cardiac care for DMD, followed by Prof. Eugenio Mercuri’s emphasis on the importance of early diagnosis. Prof. Imelda de Groot returned to present the Accredited Duchenne Centers Program, and Dr. Mahalekshmi Desikan addressed renal management in adults with DMD.

The conference concluded with Elizabeth Vroom presenting on the importance of newborn screening for DMD, announcing the white paper ‘Newborn Screening for Duchenne Muscular Dystrophy: The Time is Now’. The aim of this paper is to present the World Duchenne Organization’s position on newborn screening (NBS) for Duchenne muscular dystrophy (DMD) based on families’ experiences and scientific developments. It provides a thorough analysis of the urgent need for NBS for DMD. Additionally, it offers information and guidance for national patient organizations to advocate for starting a NBS program for DMD in their country or region. The paper was developed by a working group and reviewed by leading experts in the field.

With live interpretation in Spanish and French and the availability of session recordings, the conference ensured broad accessibility and continued learning opportunities for all attendees.

 

About the Duchenne Care Conference

The Duchenne Care Conference is an annual online event organized by the World Duchenne Organization, aimed at healthcare professionals, clinicians, occupational therapists, and others in the clinical community. Its goal is to keep everyone involved in the care of Duchenne and Becker MD up to date with the latest developments in care.

The conference brings together various stakeholders to present and discuss the latest advancements and innovations in the treatment and care of the disease. It also provides a forum for networking and collaboration among the Duchenne community. The program and speakers are guided by the board of the World Duchenne Organization and the Advisory Board of the Accredited Duchenne Centers Program.