Welcome

We are a parent and patient started organization dedicated to the awareness, treatment and eventual cure for all forms of Emery-Dreifuss Muscular Dystrophy. 

We believe the EDMD is not just limited to the rare cases we see today, but this is a far reaching set of genetic conditions that lead to the adverse and serious medical issues we see today. 

We believe in our base mission goals:

Education - Help to educate the patient and medical treatment providers of the signs, effects and long term treatment plans for EDMD patients.

Research - We want to make research more accessible to the patient base and medical community that is attempting to care for and treat our patient base. 

Assistance - We have formed a fantastic community of patients, parents and medical professionals that are here to help all of us through this.