Data for Cure and Care
A collective initiative
to promote understanding
Duchenne Data Foundation is a worldwide collaboration in order to enhance the understanding of the course of Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD), the effects of treatments, the needs and preferences of DMD/BMD patients and all other aspects relevant to the lives of DMD/BMD patients.
More on DDF
Duchenne Community Advisory Board
The Duchenne Data Foundation is facilitating a bi-annual Community Advisory Board which will offer who offer its expertise to sponsors of clinical research. The Duchenne CAB coordinator is Sally Hofmeister.
Duchenne Data Foundation received a STRIVE award to launch a digital platform to encourage patient identification, interactions and communication between DMD patients and healthcare professionals, researchers and patient organizations in Europe.
Duchenne Patient Academy
Duchenne Data Foundation is organizing a yearly meeting for Duchenne and Becker MD advocates to train them in advocacy, communications, regulatory and science.
International project coordinated by Nicoletta Madia to highlight psychosocial issues in Duchenne and Becker Muscular Dystrophy through educational materials, information and storytelling.
Duchenne Data Repository
Data collection hub to connect and create new knowledge from Duchenne and Becker muscular dystrophy.
Brain Involvement iN Dystrophinopathies (BIND)
Localising the isoforms that the DMD locus produces in the brain and their function; Improve understanding of postnatal brain restoration of the different dystrophin isoforms using preclinical models; Defining the spectrum of brain comorbidities in DMD and BMD individuals, and how to best assess them; and Creating optimal and uniform outcome measures to assess brain comorbidities in DMD and BMD.
EURO-NMD Registry Hub
The aim is to build a registry hub for all neuromuscular diseases, including undiagnosed patients, and connect with the existing ones. The project will use internationally agreed, state of the art concepts such as being built with a system that will collect standardized common data elements, defined by the Joint Research Center.
Mirjam Franken-Verbeek, Ir
Founder & Board member
Mirjam is a mother of a 20-year old son, Ralph, with DMD. She has a background in Human Nutrition at the Wageningen University. Shortly after the diagnosis of Ralph’s disease in 2002, Mirjam engaged in voluntary work for Duchenne Parent Project the Netherlands (DPP). Since 2006 she was involved as a board member of DPP Netherlands. Since 2015 she works as a project manager for this foundation.
Georgios Paliouras, PhD
Father of a boy with Duchenne Muscular Dystrophy. Computer Science researcher at NCSR “Demokritos”, Greece. Research areas: Artificial Intelligence, Machine Learning, Data Analytics, Precision Medicine.
Ryan has been working in the Duchenne field for over 15 years. He is the Sr. Vice President of Community Engagement at Parent Project Muscular Dystrophy, and has expertise in the global Duchenne field about grassroots outreach, social science work, and patient-focused drug development. He is also involved in the Duchenne Registry.
Duchenne CAB Coordinator
Mother of an adult with Duchenne. Coordinator of the Duchenne Community Advisory Board (CAB). In here, she facilitates discussions in a neutral setting on the latest developments and challenges related to medical research and procedures with companies and research bodies.
Elvina Sakellariou, PhD
Project manager of Duchenne Data Foundation. Researcher in the field of biomedical data.
Developing and carrying out community building activities with various groups across the world. Initiator and project manager of Social Duchenne.
Developing and carrying out communication activities for the global Duchenne and Becker community. This includes the design and management international workshops and conferences, webinars, and press and (social) media coverage.