DMD Care Association provides support for people affected by Duchenne in Romania. The non-profit organization is based in Romania and active since 2019. They are members of EURORDIS and Alliance for Rare Diseases Romania. Now, they are joining the World Duchenne Organization.
Start of the organization
The president of the organization is Adrian Croitoru, father of a 15-year-old boy with Duchenne. He started this organization to help other families with people affected by Duchenne MD.”Our purpose is to improve the life quality of children that are suffering from Duchenne and other neuromuscular disorders. We do that by creating a framework to assist them in health and educational matters.”
He continues: “We do this by providing equitable access to early diagnosis, quality treatments and rehabilitation services. Next to this we organize social events and community integration, research, education, lobby and advocacy activities. We are involving families, medical specialists, teachers and other professionals in the health and educational systems. This way we are making a significant contribution to achieving our objectives.”
DMD Care Association’s goals:
The goals of the DMD Care Association are the following:
- Improve the quality of life of people affected by Duchenne Muscular Dystrophy and connecting them to the community.
- Establish a national database for patients, to be presented to authorities, Reference Centres for neuromuscular diseases and the patient community.
- Map the national number of people diagnosed Duchenne and Becker, location and areas where they need healthcare assistance.
- Build a support group for patients affected by DMD/BMD and their families.
- Create a network of specialists to help patients with DMD/BMD manage their condition and be included in society.
Building an effective network
By doing so, Adrian aims to build an effective network with Duchenne families, teachers, healthcare professionals, and other stakeholders. “We are focusing on activities to help develop diagnostics, treatments, rehabilitation services, and research. We promote a multidisciplinary approach to healthcare. This plays with a crucial role in the complex evaluation of children, as well as in the creation and adherence to treatment.”
Joining World Duchenne Organization
Adrian concludes: “Collaboration, sharing experience and good practice at international and national level is needed. This will ensure equal access to truthful information, relevant and timely diagnosis and high quality healthcare for patients with DMD. This is the main reason we are joining the World Duchenne Organization. Together, we are stronger.”