PatientsRare Disease Day 2025: Spreading Awareness and Support Holding Events Worldwide

Have you ever heard of “Rare Disease Day (RDD)”?

Globally, it is estimated that over 300 million people suffer from rare and intractable diseases. However, due to the small number of patients per disease and the complex mechanisms involved, research and development of treatments and medicines often progress slowly. Furthermore, information to help improve patients’ quality of life (QOL) is not easily accessible, and awareness and understanding from the surroundings and society remain limited.

To address this situation, RDD was established in 2008 by EURORDIS - Rare Diseases Europe to promote social opportunities, equitable access to healthcare, diagnosis, and treatment for people living with rare and intractable diseases. It is observed annually on the rarest day of February — either 28 or 29 February — and every February, more than 100 countries worldwide hold activities that connect patients and society to raise awareness about rare and intractable diseases.

Kyowa Kirin designates February as RDD Month and conducts various awareness events globally. These activities provide opportunities to deepen understanding of the current situation of rare and intractable diseases and to refocus attention on unmet medical needs.

Throughout February, Kyowa Kirin colleagues worldwide share images and videos as part of the #LightUpForRare campaign. The theme of “light” is expressed through candles, lanterns, workplace and home lighting, city lights, and more.

To celebrate RDD 2025, we held a global event called the “Global Chain of Lights,” inviting employees around the world to submit light-themed photos and videos. We produced a single video showcasing our collective effort to shine a light on rare diseases based on 80 images and videos submitted by employees.

The Corporate Communications Department recommended that employees worldwide use the virtual backgrounds provided by EURODIS during RDD Month. Furthermore, Our leadership team including Masashi Miyamoto, Global CEO and Abdul Mullick COO; Jeremy Morgan, President of Kyowa Kirin International (EMEA); and Richard Wilson, Senior Vice President, Rare Disease Franchise Head North America, shared global messages themed around “EQUITY” via social media.

Ernesto Aycardi (Global Development Head at Kyowa Kirin) and Angela Williams (Global Health Economics and Outcomes Research Head at Kyowa Kirin International) featured in the Rare Disease Day supplement produced by the UK media outlet, The Telegraph. They expressed their belief that patients’ voices can drive innovative progress in the treatment of rare and intractable diseases.

Our mission as a pharmaceutical company and the initiatives derived from it were showcased in a special article on rare and intractable diseases in the French daily newspaper Le Monde. Moreover, Kyowa Kirin International (EMEA), together with specialists who are partners and experts in the field of rare diseases, supported the creation of a special program on rare and intractable diseases. This program was hosted by the nationwide broadcaster BFM TV.

Kyowa Kirin North America posted the video about people living with intractable diseases via social media.

Kyowa Kirin Japan region held an event where employees watched a video about a rare disease patient’s journey while having lunch and shared their impressions with fellow attendees.

Both face-to-face and online events were held so that as many employees as possible could participate. As a result, about 100 employees took part in the event and learned about patients’ daily lives and their reflections on the medication they actually use, which gave those employees an opportunity to rethink what they should do and why they work at Kyowa Kirin.

Takanobu Nomura, from the Pharmacovigilance Division, who attended this event, commented, “This event was quite meaningful for the reason that we were able to hear a patient’s story through a video and stories shared by doctors who worked on developing a drug 20 years ago. I truly felt that developing a drug is not the end in itself, and that listening to the voices of patients who use the drugs, their family, and medical professionals is very important.

Kyowa Kirin has also participated in the donation program managed by RDD Japan since 2014, with the aim of supporting RDD events and promoting awareness of rare and intractable diseases. A donation booth was set up at the event held at Tokyo HQ, and employees were invited to make donations via the RDD Japan website.

2025 marks the fourth year of Kyowa Kirin’s company-wide RDD event. It has begun to take root within our organization as a valuable opportunity for all employees to reaffirm our unwavering commitment to continuously meet the needs of patients across the world and to reflect on what we can do to raise the awareness and understanding of rare and intractable diseases.

Through these activities, we hope to contribute to even more incremental progress in research and development of treatments and medicines for rare and intractable diseases, ultimately improving the quality of life (QOL) for those living with these conditions. We will continue our efforts to expand the circle of understanding and support for the rare disease community.

The activities mentioned in the article were conducted under the relevant laws and regulations of each country.