Rare disease

TopSustainabilityRare Diseases

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.


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

In FY2021, the RARE DISEASE Project was kicked off with its first global awareness-raising activity for MPS Awareness Day on May 15, sponsored by the MPS Society, a support group for patients with MPS in the United States.
JCR decided to make this a company project after a subsidiary employee made a proposal that JCR think about what it could do for MPS Awareness Day.
In FY2022, photos in the theme color purple and the message of MPS awareness were solicited Company-wide, and they were distributed through the internal bulletin board in a format that could be downloaded as posters at each business location. We also donated funds to the National MPS Society in proportion to the number of photos collected. In addition, employees wore hand-made purple ribbon badges and newsletters related to raising awareness of MPS were distributed through the internal e-bulletin board.

MPS Awareness Day
Wearing a handmade purple ribbon badge

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.


I joined the RARE DISEASE Project because I wanted to hear directly from patients and their families, to reconsider the question “what can I do for them?” and to put what I learned into action. This is the second year of my appointment to the project. I’ve had several opportunities to speak with patients and hear their views firsthand through sessions and other events. By engaging with the patients, I was able to feel their daily suffering in the absence of effective treatment options, as well as their strong determination to fight their disease and stay alive, and their yearning for the creation of new medicines.
As a clinical development professional, I want to truly understand “what patients are suffering from and what they are thinking” and apply this knowledge to the development of clinical trial design. Furthermore, using scientific data from clinical trials and other studies, I would like to raise awareness of the fact that many people are suffering from diseases all over the world, as well as convey the voices of patients and their families, through the process of applying for new drug approval.

Marin Noda
Domestic Project Coordination Group, Domestic Development Unit, Development Division