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.
In FY2020 and again in FY2021, the COVID-19 pandemic compelled us to conduct activities centered on participation in events held online and distribution of reports on those events. In August, we held the RDD Internship online. For this event, we welcomed the participation of students from Osaka Meisei Gakuen high school.
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 hear opinions directly from patients. In FY2021, we held “MPS I Patient Journeys,” an in-house speech event on MPS I in October, and employees could ask the patients for details from the patients’ points of view, including their actual symptoms, diagnosis histories, and how they spend a week.
And, as a new initiative, we produced an original eco-bag printed with illustrations and the project slogan, “What JCR can do for rare diseases,” and donated the proceeds.
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 on a global basis.
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, the images were distributed in the form of downloadable posters at each business location, and donations in proportion to the number of photos collected were made to the MPS Society. In addition, people wore hand-made purple ribbon badges and a newsletter related to raising awareness of MPS was distributed through the internal bulletin board.
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 2022, we held events related to rare and intractable diseases in various places under the theme of “The Voices Are Coming from Everywhere: Finding, Learning, Sharing Rare Community.” JCR displayed poster panels about lysosomal storage disorders, Fabry disease and mucopolysaccharidosis (MPS), in the Town Hall on B1 of Tokyo Tower and online.
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 and Japanese professional tennis player Masamichi Imamura have continued awareness-raising activities worldwide by placing the logo on 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 and with Mr. Imamura in April 2021.