Duchenne Data Foundation and the World Duchenne Organization start the Duchenne Emergency and Capacity Building Program


Amsterdam, 15 February – In Rare Diseases like Duchenne and Becker Muscular Dystrophy (DMD/BMD), developing strong patient communities plays a fundamental role. Communities are able to act on a local level to have a global impact for the well-being of all the families of people who live with this pathology. However, local communities are not always equipped with the right tools and opportunities to do so, and are often affected by emergency situations that have a significant impact on the local community. 

This is the case currently in Lebanon where the effects of the large explosion at the city port and the Covid-19 pandemic resulted in an emergency situation: Many families need medical equipment to take care of their sons, who suffer from DMD/BMD. For this reason, Duchenne Data Foundation and the World Duchenne Organization decided to set up a support program for local communities that has global supervision through a strategic global capacity building program. The program is starting with the emergency in Lebanon after the Beirut Explosion.

Elizabeth Vroom, chair of the World Duchenne Organization and initiator of the project, is happy with the delivery. “Gathering the equipment was easy. The Dutch centers for home ventilation connected to University hospitals, and two companies offered to donate equipment. A foundation specialized in the reuse of medical equipment checked the ventilators” explains Elizabeth. “The biggest challenge was shipping the goods to Lebanon. We wanted to be 100% sure the materials would really reach the families.” 

Thanks to in kind donations from the Erasmus MC, Utrecht MC, UMC Groningen, Medic Foundation, Medipoint, Vivisol and the financial support of Dutch Duchenne families and Sarepta Therapeutics, the World Duchenne Organization was able to coordinate shipping of medical equipment to Lebanon.

When the equipment arrived, founder of the Lebanese DMD patient organization Land for Hope Aida Adra and her family were overjoyed. “It was so smooth to handle the donation, and we were so excited to see what we have for our kids, like Christmas gifts. Finally we opened all the boxes, and by tomorrow we will start to distribute it to the families. When people are not able to come, we will make sure to deliver it to them. Thank you to everyone who participated in this operation. Proud to be a part and member of the World Duchenne Organization” 

For more information on the emergency program, please contact Nicoletta Madia

Image: Delivery of the medical equipment in Lebanon. Left is Aida Adra, founder and member of Land for Hope with her husband and child.

About Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy is a degenerative and fatal neuromuscular condition that affects approximately one in 5,000 live male births worldwide. Those affected progressively weaken and lose the ability to walk. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with DMD typically live into their late twenties. 

About Duchenne Data Foundation

Duchenne Data Foundation (DDF) is a worldwide collaboration that aims 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. 

About World Duchenne Organization

The World Duchenne Organization (WDO) is a worldwide organization connecting 44 member patient organizations from 36 countries dedicated to finding a cure and viable treatments for Duchenne Muscular Dystrophy. The WDO has made it its mission to promote good standards of care, inform patients and create a hub to support and evolve our activities through dynamic advocacy and an active, vocal and informed patient body around the globe.