Tuesday, May 27, 2014

Sakura Friends (Japan)

Our friends from Japan would like to be part of our Global Partners Program. Like us, their group feels that international cooperation is extremely valuable. Their group is also very eager to learn through exchanging information and sharing communication.
Patients in Japan have difficulties finding a doctor who knows how to treat the porphyrias, just like we do here in the US. Together, we will be able to enhance awareness of the porphyrias all over the world.
Members of the Japanese Sakura Friends, would like to communicate with other people in the US. Please learn about their group below:
Welcome to "SAKURA Friends"
Japanese porphyria patients group, "SAKURA Friends" (SAKURA means cherry blossoms) was formed in 1997 by porphyria patients, families and support volunteers. Today the group has 66 members (as of July 2007).
The group's activities include issuing newsletters three times a year, organizing gatherings and study meetings, providing information and encouraging communication among members in the website, etc. The group makes efforts to:
  • Enhance knowledge about porphyria
  • Encourage communication among members
  • Support research for early diagnosis and improvement in treatment, which ultimately lead to cure
  • Contribute to improve social system and environments for patients and families
We welcome porphyria patients, families and anybody that supports the group's aim and efforts. Welcome!!!
We are also eager to make friends outside Japan so that we can exchange information and experiences and learn from each other.
Those who read Japanese can find more information about our group at www.sakuratomonokai.com
  • "Remember....Research is the key to your cure!"

No comments:

Post a Comment

ALAD Gene aminolevulinate dehydratase & ALAS2 gene 5'-aminolevulinate synthase 2

Learn about each gene-  aminolevulinate dehydratase The   ALAD   gene provides instructions for making an enzyme known as delta-aminole...