2) Crisis management for patient groups

  • Immediately following the disaster, we focused on ascertaining real-time conditions in the stricken area and identifying solutions.
  • Appeals for relief donations from all around Japan began right away.
  • Disseminating information regarding the conditions in the disaster area by way of JPA email newsletters offered a little comfort to the victims.
  • The first JPA disaster bulletin was issued (5) days after the earthquake.
  • Thirty-one (31) bulletins were circulated through May 12th.
  • Also information from the Ministry of Health, Labour, and Welfare was gratefully received. It was then forwarded by the JPA to member groups and directors in the stricken area.
  • Visits began in April for intractable disease counseling, patient groups encouragement and to support centers (NANBYO centers) in each of the regional prefectures. Surveys were also conducted to determine actual conditions.
  • A car was provided for the JPA by the Hokkaido NANBYOREN and was invaluable for timely visits to Aomori, Iwate, Miyagi, Fukushima and Ibaraki. House of Representatives member and Tochigi NANBYOREN’s director, Tomoko Tamaki joined the visit to Fukushima.

The survey reports were:

  1. Submitted at the JPA General Meeting
  2. Posted on their website
  3. Presented at the MHLW research team meetings
  4. Included in the programs for the International Conference for Rare Diseases and Orphan Drugs (ICORD) (Tokyo 2/12).