As a company that has been engaged in the research and development of pharmaceuticals for rare diseases since its inception, JCR is involved in awareness-raising activities to support patients.
RARE DISEASE Project
The RARE DISEASE Project is a cross-sectional internal awareness-raising project for all JCR employees to further increase their understanding of rare diseases, with “What JCR can do” as its motto. We collect information and share it internally to deepen employees’ understanding of rare diseases. We also support and cooperate with patient groups and support organizations that help people fight rare diseases.
At JCR, we promote awareness within the company by conducting fundraising activities and encouraging employees to wear official badges for Rare Disease Day, distributing reports on participation by employees in events organized by patient groups and organizations that support patients with rare diseases, and arranging internal lectures for our employees. For each lecture, we invite rare disease specialists and members of patient groups to talk about disease mechanisms and their experiences. In January 2019, we held our first public seminar titled “Learning More about Rare Diseases” in Ashiya, Hyogo Prefecture, where JCR is headquartered. At the event, lectures were given by a rare disease specialist, a leader of a patient support group, and the manager of Momiji House, a facility for seriously ill children and their families operated by the National Center for Child Health and Development. Through this seminar, we strove to increase knowledge of rare and intractable diseases primarily among Ashiya residents.
RARE DISEASE Project team
Rare Disease Day
From FY2015, JCR has been a supporter of Rare Disease Day (celebrated globally). There are patients suffering from rare and intractable diseases around the world, but the total number of these patients is small, and the disease mechanisms are complicated. Therefore, almost no progress has been made in research and development of therapeutics and methods of diagnoses for some diseases. Rare Disease Day activities began in Sweden in 2008 with the aim of improving the quality of life of patients with rare and intractable diseases through better diagnoses and treatments. It is hoped that these activities will create a bridge between patients and society, and help to increase awareness of rare and intractable diseases.
RDD 2019 in Japan Official video
To commemorate Rare Disease Day, JCR encourages employees to wear official Rare Disease Day badges and raises funds within the company in February every year. Funds raised are donated to organizations working to provide information to patients with rare diseases, encourage cooperation with healthcare professionals, promote research to develop therapies, and raise awareness in society.
The RARE DISEASE project is a cross-sectional internal awareness project that has been active since 2016. Currently, a total of 13 members from various divisions within JCR are active as members of the project.
Our activities center on two areas: (1) Collection and internal dissemination of information intended to deepen understanding of rare diseases and (2) Collaboration with and support for patient groups and rare disease support organizations. Specifically, our activities include participation and interaction with patient groups at seminars and distribution of reports on those activities within the company. We also hold in-house lectures and fundraising events, disseminate Rare Disease Day events in the company, and participate in other nationwide events. Going forward, we are considering ways of expanding the range of our activities to include a point of contact for collaboration with patient groups, volunteering and other support activities, as well as awareness-building activities aimed at the general public through public lectures and other events.