Myotonic Dystrophy Patients’ Group of Japan, commonly known as DM-family, was established in 2016.
Until then, there had been no patient group exclusively for myotonic dystrophy in Japan. “I want to talk with other DM patients and their families. I hope my friends will join me.” This was what Akane Hatano, the founder of DM-family, was feeling when she attended a lecture by a group of doctors and learned that patient registry was necessary for the development of therapeutic drugs.
She also learned that many DM patients stopped going to hospital. Doctors said that if patients didn’t seek medical attention just because there was no cure, their prognosis would worsen.
Having heard that, Akane realized that “patients who stopped going to hospital could not possibly understand the need for patient registry, nor know the risks of not seeing a doctor.” Thus, she came up with the idea of establishing this association.
Together with 10 patients and their families, DM-family was established with the following goals:
- To contribute to DM research as patients.
- To provide correct DM knowledge to patients and their families.
- To raise public awareness about DM.
DM-family has been active since then, holding various lectures and social events and distributing easy-to-understand booklets for many DM patients (both congenital and adult-onset DM) and their families.
At DM-family, we will continue our activities to discover what patients can do so that patients and their families can live happily.
IDMC-13 Families Day: https://idmc13.dm-family.net/en/