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 for rare diseases” 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 with rare diseases. We recruit members through a show of hands, emphasizing the importance of employees showing initiative, and stipulate a two-year appointment without fixed membership.
As awareness-raising activities within the Company, we conduct such activities as encouraging employees to wear official badges for Rare Disease Day (RDD), fundraising activities, conducting global consciousness-raising activities for MPS Awareness Day, distributing reports on participation by employees in events organized by patient groups and organizations that support patients with rare diseases, and holding in-house lectures.

Description of Activities in FY2022

Although the COVID-19 pandemic continued through FY2022, patient groups gradually resumed in-person meetings. Several RARE DISEASE Project members participated in a social event and joint symposium of the Japan MPS Patient and Family Group held in Tokyo in August 2022. We also welcomed students from Kobe Kaisei Girls’ Senior High School, Osaka Meisei Gakuen Senior High School, and National Institute of Technology, Tsuruoka College in November 2022 for an online RDD high school study tour (JCR internship).
As a company aiming to become “a global specialty pharma in the rare disease arena,” JCR believes that it is extremely important to provide opportunities for each and every employee to learn what patients are going through. As a new initiative in FY2022, Given: Ima koko ni aru Shiawase (Given: The happiness of being here now), a documentary movie featuring patients with rare diseases such as MPS and their families, was made available to employees through on-demand streaming from August to September 2022. Many of our employees viewed the documentary and gave many comments and feedback about it. JCR will continue to carry out not only research and development focused on orphan drugs, but also activities that lead to broad-based support for patients and their families on a global basis.

MPS Awareness Day

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.

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.
Moreover, Japanese professional golfer Masahiro Kawamura, Japanese professional tennis player Masamichi Imamura, and Japanese professional tennis player Shinji Hazawa have been appointed as RDD Japan ambassadors by RDD Japan secretariat office and they have continued awareness-raising activities worldwide by placing the RDD official logo mark on their clothing, caps, bags, etc., and by distributing postcards and pin badges during domestic and international tours. JCR signed a sponsor agreement with Mr. Kawamura in October 2019, Mr. Imamura in April 2021 and Mr. Hazawa in April 2022.