PatientsRare Disease Day 2024: Employees Around the World Show They Care

The last day of February each year marks Rare Disease Day (RDD), a global initiative aimed at improving the quality of life (QOL) for patients with rare and incurable diseases. Kyowa Kirin conducts activities to raise awareness on this day every year, using it as an opportunity to keep up to date on the state of rare and incurable diseases while also renewing our commitment to support patients living with them.

Rare Disease Day took place on February 29 this year, and throughout the RDD Month of February, employees around the world engaged in various initiatives.

In North America, we continued our support of RDD from last year through our sponsorship of NORD (National Organization for Rare Disorders), an advocacy group leading the region’s RDD campaign. NORD conducts a variety of research and implements concrete measures and programs to enhance the health and welfare of people living with rare diseases and their families.

In-house, people were encouraged to join in NORD's "#ShowYourStripes" campaign, an activity that welcomes individual participation. The "#ShowYourStripes" campaign involves wearing striped clothing or accessories as a nod to the zebra, the symbol of rare diseases in the United States*. It aims to create opportunities for discussion about rare diseases and to spread understanding.

On February 6, a screening was hosted featuring short films from the "Disorder: The Rare Disease Film Festival." The event, which offered both in-person and online viewing options, allowed participants to gain insights into what life is like for the millions of people living with rare diseases worldwide, including how family dynamics change and where families go for support.

Additionally, KKNA sponsored the production of an episode focused on X-linked Hypophosphatemia (XLH) that aired on Behind the Mystery^TM, the first and only television series dedicated to raising awareness about rare and genetic diseases through powerful patient storytelling. The program featured the voices of physicians, patients, and their families, providing many people with a deeper understanding of XLH.

It further published articles in German-language media conveying the voices of individuals with rare diseases to a wide audience.

Representatives from the Northern Cluster (UK, Ireland, Nordics & Baltics) attended an RDD 2024 reception organized by Genetic Alliance UK, comprising over 200 genetic disorder patient advocacy groups (PAGs). The event was held in the House of Commons, where attendees, including patient groups, politicians, and pharmaceutical industry representatives, listened to speeches by patients, parliamentarians, and health ministers.

At a meeting attended by all employees, they took time to recognize and celebrate the significance of RDD, lighting the venue up in participation of the company’s #LightUpForRare event in support of the day.

In Japan, we organized cafeteria events, video messages from top management, and a "message event" open to all employees.

In our facilities’ cafeterias, we continued last year’s initiative by offering a menu comprised of therapeutic meals for patients with rare and incurable diseases and showing related videos. At the Ube Plant (Yamaguchi Prefecture), a booth was also set up by RDD Japan, and a lecture on rare and intractable diseases was held. Pamphlets, posters, and official RDD donation goods were displayed, providing employees with a valuable opportunity to deepen their understanding of rare and intractable diseases. This approach allowed employees to participate casually during lunchtime and learn through experience. "We created an opportunity for employees who work at research labs or factories to reflect on patients and the diseases themselves in their daily work environment," said Natsuki Toyoizumi of the Corporate Communications Department.

During RDD Month, we implemented two initiatives to revisit and reflect on "Our Mission," which is shared by all Kyowa Kirin employees, which expresses our commitment to walking alongside people living with illnesses, including those with rare and incurable diseases. The first was a continuation from last year of comments from top management. These provided employees a valuable insight into the passion our executives display toward "Our Mission," which they would usually not observe on a daily basis.

As a global activity, Kyowa Kirin participated in the "#LightUpForRare" initiative to show support for RDD. We called on employees worldwide to create images and videos related to lights, assembling them into a single video.

This marks the third time Kyowa Kirin has conducted RDD events globally. Employees in various regions are considering and implementing possible initiatives, thus expanding our circle of activities. At Kyowa Kirin, we will continue to reflect on people living with rare and incurable diseases, reaffirming our mission and the significance of our work.