PADJ was established for the communication between Japanese and international patients
with dysferlinopathy (Miyoshi myopathy, Miyoshi muscular dystrophy 1 (MMD1) and
limb-girdle muscular dystrophy type 2B (LGMB2B), development of early treatment for
dysferlinopathy aimed at a complete cure.
It is important to promote research of dysferinopathy and future clinical trials that organize
a system in which doctors and researchers can cooperate. We would like those to know it is
important for patients to understand dysferlinopathy and consult a doctor periodically.
All the PADJ members believe in the establishment of a cure and perform promotional activities
in cooperation with each other.
The genes responsible for MMD1 and LGMD2B are the same, therefore
there is a possibility
that these two diseases are identical.
We try to facilitate patient interaction and share information for a better understanding of dysferlinopathy.
MMD1 and LGMD2B are rare diseases, and there are few patients.
The Japanese government is reluctant to fund such a minor disease.
One patient managed to come up with research funds and established "dysferlinopathy research aid fund"
for the discovery an early cure.
The dysferlinopathy research aid fund was established with a strong wish to facilitate research of patients
and aid family members.
In addition, we are preparing to submit a petition the government at the proper time.
[International patient communication]
There are patients suffering from dysferlinopathy all over the world.
We are trying to communicate with overseas patients and are aiming for a complete cure.
We promote the registration of patients with dysferlinopathy in cooperation with overseas research groups and institutes.
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