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Democratizing access to information and care for Duchenne MD

The World Duchenne Organization (WDO) received a grant to empower patients and parents in developing countries affected by Duchenne Muscular Dystrophy (DMD). This initiative aims to educate patient advocates and foster the creation of new patient organizations. Regions in South Africa, South Asia and Africa receive education and mentoring in terms of research, care, capacity-building, policy and awareness while supporting them to create and sustain national patient organizations.

The project is divided into two phases. The first phase ‘Advocacy, Education and Training’ will focus on engaging developing countries in an open multi stakeholder educational platform. Experts from every field meet with advocacy leaders to exchange knowledge, experiences and best practices.

The second phase will be focusing on ‘Capacity Building, Patient Organization Setup and Mentoring’. During this phase, additional training will be directed to families interested in setting up an organization in their country. This includes how to get legal recognition, map the community, and engage with various stakeholders.

“Communities can make a difference. This innovative program will help them in creating powerful networks and strong actions for the benefit of thousands of people”, says Nicoletta Madia, WDO Community Coordinator and project manager of the program.

This initiative received the grant from SENSE Foundation Brussels. This foundation supports science (with a focus on nutrition and genetics), environment protection, sustainable development, education, arts and culture and the less fortunate. They provide ad hoc assistance to charitable organizations helping people dealing with specific/temporary hardship. ​



Nicoletta Madia, Community Coordinator

[email protected]


Photo by Sebastián León Prado on Unsplash