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SORD's Support

Domestic Operation

Mission

  • To make all the underlying rare disease patients in Japan visible and connect them with the same diseases patients to bridge the information gap.

  • As the next stage, to develop the environment where patients can build reciprocal relationships with clinicians/researchers.

Cooperative Organization

  • National/Local Administrations

  • Intractable Diseases Support Centers

  • Medical Institutions

Domestic Operation Overview

SORD's Domestic Department uses the following 4 tools in order to guide from a community of the same disease patients (in Re:me) to a patient organization with a shared destination.

Rare Disease Forum

Rare Disease Forum will be held biannually in Kyoto and Tokyo for rare disease patients to understand the importance of a goal oriented connection with the same disease patients and the necessity of making a movement by patient themselves.

Re:me

"Re:me" is a SNS(Social Networking Service) dedicated for the patients with rare diseases SORD supplies.
Re:me enables patients to meet the same disease patients and build their own community.
We encourage the community in Re:me to become a patient organization by presenting the importance of a patient organization with aims shared by its members.

  • Searching the same disease patients

  • Creating / enrolling in communities

  • Using an online video chat (Skype)

  • Uploading pictures

  • Writing and keeping diaries upon your interest(Great tool to keep you up with the course of your symptoms)

  • Writing reviews of books and products

  • Sending and receiving messages

Patient Organization

We encourage the community in Re:me to become a patient organization by presenting the importance of a patient organization with aims shared by its members and SORD's continuous support after the establishment of a patient organization.
We support the established patient organization in:

  • holding its inaugural meeting to make the aims of the organization clear to its members in collaboration with SORD's three departments.

  • getting overseas information by cooperation of patients / patient organizations around the world.

  • building reciprocal relationships with domestic and international clinicians / researchers as needed.