Activities Report / InformationREPORT & INFORMATION
2026.05.07
Activity report
- #Rare disease
- #Rare disease day
- #Disease awareness
"Rare Disease Week 2026" disease awareness event held for employees
Rare Disease Day is an international awareness initiative that began in Sweden in 2008, aiming to improve the quality of life for individuals living with rare and intractable diseases through better diagnosis and treatment. In Japan, these efforts have flourished nationwide since 2010, providing a vital opportunity for patients, their families, and the wider community to come together and connect.
Today, it is estimated that between 5,000 and 8,000 rare diseases exist worldwide, affecting approximately 350 million people. Despite these staggering numbers, patients and their families continue to face immense daily challenges, ranging from a lack of specialized information and a shortage of experts to delayed diagnoses and the inherent difficulties of drug development.
MEDIPAL Group held "Rare Disease Week 2026" in observance of Rare Disease Day on February 28, encouraging every employee to deepen their understanding of rare diseases and reflect on the daily lives of patients and their families.
Internal Workshop (February 17)
This year, we co-hosted an internal workshop with JCR Pharmaceuticals Co., Ltd. to create "Patient Journey Maps*" by listening to firsthand accounts from patients' families.
*Patient Journey Map: A visual, chronological representation of a patient's experiences—how they think, feel, and act—from the onset of symptoms through diagnosis and treatment.
Through this workshop, participating employees shared many new insights and their passionate commitment to their future work.
Key reflections from our employees:
- "I was deeply struck by the severity of the disease and the long-term burden on families. Hearing these stories firsthand provided a profound depth of understanding that information on paper cannot provide."
- "It was heart-wrenching to learn about the agonizing medical decisions parents must make each time a child's life is at risk. It truly forced me to pause and deeply reflect on what I would do in their position."
- "Creating a Patient Journey Map made me realize just how superficial my previous understanding had been."
- "I realized that support must extend beyond the patient; care for the caregivers—who often sacrifice their own sleep and personal time—is essential."
- "It was a powerful reminder that behind every piece of information we handle in our daily work, there is a patient's life and a unique story. It has given me a new perspective on the importance of what we do."
- "I want to ensure this learning isn't just a one-time event. I feel a strong responsibility to involve my colleagues and share these insights, so we can work together to eliminate stigma and reaffirm the significance of the support we provide."
Internal Exhibits and Quiz Events (February 24–27)
We held "Rare Disease Week 2026" as a disease awareness event for employees from February 24 to 27, 2026.
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Rare Disease Awareness Displays
Information regarding rare and intractable diseases was displayed on digital screens at the Tokyo head office entrance and throughout the office floors.
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Panel and Patient Journey Map Exhibits
To deepen employee understanding of rare and intractable diseases, we displayed informative panels about the challenges facing patients and their families. Additionally, we shared the Patient Journey Maps created during the workshop held on February 17.
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Dedicated Portal and Interactive Quiz
We launched a dedicated portal on the corporate intranet to introduce basic knowledge and specific challenges faced throughout the patient journey. During this period, we also featured an interactive quiz designed for employees to learn in an engaging way, which received high levels of interest and positive feedback.
Key reflections from our employees:
- "While I want to proactively seek out information, finding the time during a busy workday can be a challenge. I truly appreciate this opportunity to engage with information that I wouldn't normally come across."
- "This portal provided a valuable opportunity for me to learn about rare diseases, even with my limited background knowledge. The quiz inspired me to do my own research, making the learning process both proactive and enjoyable."
- "I believe that when more people take an interest in rare diseases, it ultimately leads to better support for patients. This awareness event was incredibly meaningful in helping to raise broader societal awareness. I hope these valuable efforts continue and expand to reach even more people in the future."
We would like to continue our awareness activities to deepen the understanding of rare diseases, aiming to contribute to improving the quality of life for patients and their families.
