Rare disease

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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, 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 (RDD), 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.

Description of Activities in FY2019

In FY2019, we distributed reports on participation by employees in events organized by patient groups and other organizations. In other areas, we worked closely with the RDD Japan secretariat office to play host to the RDD Internship for Senior High School Students. For this event, we welcomed the participation of students from Kobe Kaisei Girls’ School (September 2019) and Osaka Meisei Gakuen (November 2019). In December 2019, JCR held the first RDD Charity Golf Competition. Japanese professional golfer Masahiro Kawamura, who has been appointed as an RDD Japan ambassador, was invited to the event as a special guest. JCR will continue to pursue research and development of pharmaceuticals for rare diseases, as well as conduct initiatives to provide enhanced support to a broad range of patients.

RARE DISEASE Project team

Rare Disease Day

From FY2015, JCR has been a supporter of RDD. 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. RDD 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.

RDD2020

RDD is held on the last day of February each year. With 2020 being a leap year, RDD fell on a truly “rare” day this year, reflecting the origins of “RDD.” Based on the theme of “Rare / Understanding Each Other Together–Towards Goals for Enhanced Outcomes–,” official events for RDD in Japan were scheduled to be held in 53 locations nationwide primarily in February and March. However, certain events had to be postponed or cancelled due to the coronavirus pandemic. Additionally, RDD Tokyo, which had been scheduled for February 29, was postponed to May 30, and it became an online-only event. In 2020, JCR once again assisted RDD as a corporate supporter. JCR displayed an online poster panel to raise awareness of Fabry disease.

In-House RDD Awareness-Raising Activities

To commemorate RDD, JCR encourages employees to wear official RDD badges and raises funds in-house in February every year. Funds raised are currently donated on behalf of all employees to The Support Network for NANBYO Children of Japan. From 2020, as a new undertaking, glass film bearing the official RDD logo has been created in-house, and applied to and displayed on the doors and windows of each office. In addition, magnetic sign sheets for vehicles have been applied to company cars and other places as part of our efforts to raise awareness.

Link to The Support Network for NANBYO Children of Japan website (Only in Japanese)

Donations from fundraising activities

FY2015 164,570 yen
FY2016 145,969 yen
FY2017 192,990 yen
FY2018 261,634 yen
FY2019 214,283 yen

Message

The RARE DISEASE project is a cross-sectional internal awareness project that has been active since 2016. Currently, a total of 14 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.
The project’s activities have entered their fifth year. Its circle of activities continues to grow larger and larger, with a focus on interaction and support with patient groups in JCR’s research areas.
In addition, alongside our RDD awareness-raising activities, we have been working closely with organizations that help people fight rare diseases. As a result, we have extended the breadth of our activities to include patient group support events, public seminars, and internships. At the RARE DISEASE project, we will continue to constantly consider “What JCR can do” in the rare disease arena, as we implement unique activities that capture the essence of JCR.

Takanori Nakajima
Manager, RARE DISEASE Project

Message

The RARE DISEASE project actively participates in events related to a wide range of rare diseases. Participation in these events allows us to listen closely to the frank voices of patients suffering from various rare diseases, not only the disorders covered by drug candidates currently under development at JCR, and to understand the perspectives of doctors on rare diseases. In addition, the RARE DISEASE project was formed as an internal cross-sectional project, so it enables us to understand the ideas and aspirations of various departments toward rare diseases from their perspectives. I’m currently part of a development department. I put myself forward as a candidate for the RARE DISEASE project because, through these activities, I wanted to create new medicines that are truly sought after by patients. I would like to continue to develop an appropriate understanding of the needs of patients through awareness-raising activities both inside and outside the company, and contribute to the creation of even better new medicines. Additionally, I would like to consider how we can contribute to the wellbeing of patients in ways other than the creation of new medicines, such as by providing support to patient groups, and strive to make those contributions.

Miho Tanaka
Member, RARE DISEASE Project