Registration is open here

This year’s conference theme is ‘Duchenne Care: 5 Years After the 2018 Care Considerations (Lancet)’. Particularly, the conference will include new publications, information about the implementation of these Care Considerations in different countries. What have we learned? Top experts in the field will share their experience on specific topics of DMD and BMD care and care for women with dystrophinopathies. Additionally, attendees have the opportunity to engage with the speakers through interactive Q&A sessions.

More information here

Accredited Duchenne Centers provide comprehensive care according to the international care considerations and consensus guidelines. The program is initiated by the World Duchenne Organization.

Register your interest to become an Accredited Duchenne Center

Applications for Duchenne Centers Accreditation can be submitted at the ADC website. To be eligible for application, Duchenne centers must provide multidisciplinary care, which may be delivered either by one center, or shared with other locations. However, the applying center is responsible for the care plan, coordination, communication, documentation and collaboration. A letter of support from the national patient organization is part of the application process. There are no costs associated with applying for accreditation.

After registration, centers will receive a link to a digital questionnaire to determine whether they provide care according to the screening criteria for children and/or the screening criteria for adults.

The ADC Program supports uniform care, optimal patient experience and global recognition. An educational program is part of the worldwide ADC Program.

For inquiries, please contact Merel Jansen, PhD, Program Manager of the ADC Program at merel.jansen@worldduchenne.org. 

About World Duchenne Organization

The World Duchenne Organization is the global umbrella organization of 50 national patient organizations from 38 countries. We are committed to finding a cure and viable treatments for DMD and BMD, promoting care considerations and consensus guidelines, and informing parents and people living with the condition around the world.

The poster session will provide an opportunity for patient organizations and researchers to present and discuss innovative projects in the field of Duchenne and Becker muscular dystrophy. Selected E-Posters will be accepted for virtual presentation at the 2022 Duchenne Patient Academy.

Important dates:

28 October – Registration and E-Poster Abstract Submission opens
18 November – E-Poster Abstract Submission deadline
20 November – Registration closes
22 November – E-Poster Abstract Notification Letters disseminated

More information: https://www.worldduchenne.org/news/submit-poster-for-duchenne-patient-academy-2022/

Read the official press release

The online event will take place over three days from December, 1st to December, 3rd.

Registration will open soon.

More information here.

Speakers include Prof. Ros Quinlivan, Dr. Jos Hendriksen, Nicoletta Madia, Elizabeth Vroom and Hlawulani Mkhabela. Apart from these, Duchenne adults from different parts of the world will share their experience of living with Duchenne.

Register here for the ‘Adult Life & Duchenne’ Conference

Over the past decades, the life expectancy of people living with DMD has increased significantly. This can largely be attributed to improved care. Care considerations for Duchenne were published in 2010 and updated in 2018. However, these guidelines are focus primarily on the pediatric population of people living with Duchenne.

More information here.

The online conference will take place over four evening sessions of 2.5 hours each on June 1–4, 2021. The conference will provide simultaneous interpretation in various languages.

During the conference, leading Duchenne experts will touch on topics such as respiratory care, nutrition, bone health management, stress dosing steroids, treating behavioural and learning disabilities, caring for younger patients, pain management, female Duchenne carriers, physiotherapy, dealing with gastrointestinal problems, arm function, and exercise.

To participate, please contact your national patient organisation. Patient organisations who are members of the WDO can send details of up to 20 representatives each as conference participants before May 22 to Suzie-Ann Bakker (suzieann.bakker[at]worldduchenne[dot]org).

More information here: https://www.worldduchenne.org/news/duchenne-care-conference-2021/

Dr Michaela Guglieri from John Walton Muscular Dystrophy Research Centre, an expert in the field of neuromuscular conditions, will explain the research project she is leading. She will present the study and preliminary results during the hour-long webinar.

More information and registration here: https://www.share4rare.org/news/research-study-neuromuscular-diseases-interactive-session-families