Patient association for distal myopathies

Patient association for distal myopathies

Patients Association for Distal Myopathies began in 2008 and provides much needed to support to those people in Japan affected by distal myopathies.

They actively promote and encourage the development of new drugs through scientific research. They also inform their members of the latest news in the field and strive to raise the awareness of distal myopathies amongst the general public.

Address
Hikone, Shiga Prefecture
1064-50 Tayama Matino
How Tsudi Mikio
Japan


Website www.enigata.com

 

Yuriko Oda Yuriko Oda

Yuriko was diagnosed with GNE Myopathy in 2002 and founded PADM, the Patients Association for Distal Myopathy in 2008. Japanese scientist Dr. Ichizo Nishino proved the effective material for GNE Myopathy, however there were no pharmaceutical companies interested in further development of a medicine. PADM repeatedly petitioned against this finally reversing this decision in Japan in 2010 followed by the US and other countries.

Since April 2008, PADM has been campaigning for distal myopathy to be recognised as a designated rare disease in Japan. After collecting over 2 million signatures they achieved their goal in 2015.

PADM wishes to overcome difficulties and disabilities not only for people with distal myopathies, but for all kinds of patients. They have recently started to build a new system for barrier-free map in 2015, when they received the grand prize in Google Impact Challenge in Japan.

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