Information About Duchenne Kas Hastalığı İle Mucadele Derneği
Duchenne Kas Hastalığı ile Mücadele Derneği, started as a parent initiative, founded in İstanbul Turkey in 2016 by parents sworn to end Duchenne.
DMD Turkiye’s main goal is making DMD community’s voice heard. Dedicated itself to support scientific community and accelerate scientific projects for potential therapies by active lobbying and by removing obstacles they might face. The greatest strength of the organization is the collaborative force of patient families scattered all across Turkey acting as a family who they never actually met each other. After diagnosis, the families share their experience and emotions in the news groups formed by the organization, which binds the families together. As a young organization, we have managed successful campaigns regarding awareness, which resulted in start of a commission formed by senators in 2019 who will be looking for solution and improvement of the conditions for DMD patients in Turkey. Also the organization are continuing to create projects for making DMD parents lives better.
The core competency of the organization is the collaborative force of all parents from all around Turkey. We have reached over 1000 people both on our social media and what’s app groups.
Since community is our biggest strength, we work on helping the community to get well informed, educated, and to become active patient advocates.