Muscular dystrophy is a genetic disorder
characterized by progressive muscle weakness
from muscle fiber degeneration and loss.
With disease progression, patients sometimes
become wheelchair-bound or bedridden. Most
patients eventually need help to meet the
needs of daily living. The main activities
of the Japan Muscular Dystrophy Association
(Corporation) are to promote research to
establish the pathogenesis of and find effective
treatment for muscular dystrophy, and to
provide medical care to the patients and
their families so that they can maintain
a good quality of life (QOL).
ADDRESS
3-43-11 Minami-Otsuka, Toshima-ku, Tokyo 170-0005, Japan
TEL:(81) 3-6907-3521
FAX:(81) 3-6907-3529
| 1964; |
Started as Japan Society of Parents of Muscular
Dystrophy Children |
| 1965; |
The Society was renamed the Japan Muscular
Dystrophy Association at
the 2nd annual meeting |
| 1968; |
The Association was authorized as a corporation
(Shadan-Hojin) by theMinistry
of Health and
Welfare Japan |
| 2013; |
The association was authorized as a general incorporated association by Cabinet Office |
At the present, there are more than 2,000
members in our association. The main office
is located in Tokyo.
There are 8 regional block offices of Hokkaido,
Tohoku, Kanto, Tokai/Hokuriku, Kinki, Chugoku,
Shikoku and Kyushu, which organize unique
independent prefectural activities.The association
is managed by President MD. Hisanobu Kaiya,
16 directors and 2 inspectors.
A: Accumulates information on muscular dystrophies
available to educate and enlight the disease
to patients, their families and public.
| (1) |
The Association organizes an Annual National
Meeting, a number of seminars and conferences |
| (2) |
The Association publishes a bimonthly journal
"Ichinichimo Hayaku (Hoping radical
therapy as earlier as possible)" and
many educational books of muscular diseases |
| (3) |
The Association is a member of World Alliance
of Muscular Dystrophy Association (WAMDA) |
B: Helps patients to adapt to their daily life
and to improve their quality of life (QOL)
| (1) |
The Association supports patients to improve
their lifestyle |
| (2) |
The Association provides medical seminars,
visiting disease evaluation, consultation,
camps and helps to be in employment |
| (3) |
The Association assists members to obtain
or borrow medical equipments including wheelchairs
and respirators. |
| (4) |
The Association tries to educate medical and social aspects of mucular dystrophy to public and patients. |
| (5) |
The Association establishes and administers
4 physical and social training units in Aomori, Niigata, Saitama and Kyoto
for non-hospitalized patients. |
| (6) |
The Association appeals to the government
to design treatment regimens and to improve
social welfare. |
| (7) |
The Association establishes its homepage
providing the recent advance in research
works, mdical consultation, and forms mailing
lists of the members to exchange their thoughts
and knowledge. |
C: Promotes research into muscular dystrophy
| (1) |
The Association's great efforts and supports
to the Government to establish an research
institute for muscle diseases resulted in
founding of National Institute of Neuroscience,
National Center of Neurology and Psychiatry
(NCNP) in 1978. |
| (2) |
The Association cooperates research works
on the diseases as a member of nationwide
research groups of muscular dystrophy organized
and sponsored by the Ministry of Health,
Labour and Welfare Japan. |
Members' fee is the main source of income
of the Association. In addition, subsides
from the National Treasury, several foundations,
and donations from individuals and some groups
greatly contribute to the finance of the
Association.
|
