CSL Behring Supports Rare Disease Day 2026 with Special Initiatives

CSL Behring's Commitment to Rare Disease Awareness

CSL Behring, headquartered in Minato, Tokyo, has taken a significant step in supporting those affected by rare and intractable diseases by officially becoming a diamond sponsor of Rare Disease Day in Japan 2026 (RDD Japan 2026). On February 23, 2026, the company will host a special program on TOKYO FM titled "Hitori wo, Hitori Bocchi ni Sasenai Radio Supported by CSL Behring," emphasizing the importance of community and support for patients and their families.

Rare Disease Day is an international awareness campaign aimed at improving the quality of life for patients and families dealing with rare diseases. Since 2017, CSL Behring has actively contributed to this event, marking its 10th consecutive year as a diamond sponsor. This ongoing commitment highlights their dedication to engaging in various awareness activities and lighting events across different countries.

In 2026, one of the major initiatives will be a radio broadcast specifically developed to resonate with those living with rare diseases. The program aligns with CSL Behring's RARE LiNK PROJECT slogan, "We will not leave anyone alone." The broadcast will feature discussions between a radio host and representatives from patient groups and support organizations, exploring their daily experiences and how they cope with their conditions.

In Japan, the reality for many rare disease patients is that fewer than 50,000 individuals are affected by a particular condition, often leading to feelings of isolation due to the scarcity of fellow patients and specialists. As a response, CSL Behring aims to bridge the gap by bringing patient voices and experiences to the forefront of the community through the medium of radio. This initiative seeks to enhance awareness, understanding, and empathy towards rare diseases.

About RDD Japan 2026

The theme for this year’s Rare Disease Day is "Together, We Live. Together, We Create. Sometimes, We Laugh. RDD – Ready, Dialogue & Discovery." Scheduled for February 28, the official Rare Disease Day, numerous events across Japan will be organized to raise awareness and elevate social understanding of rare diseases. Activities include lectures, symposiums, and photo contests, offering platforms for patients, families, and healthcare professionals to share their stories and engage with each other.

Program Details

Broadcasting Station: TOKYO FM
Program Name: TOKYO FM Holiday Special "Hitori wo, Hitori Bocchi ni Sasenai Radio Supported by CSL Behring"
Broadcasting Date: February 23, 2026 (Public Holiday)
Time: 15:00 - 16:50 (Local Time)
Broadcast Area: Tokyo Local (1 Metropolitan Area, 6 Prefectures)
Note: Available nationwide through radiko's paid area-free plan.
Streaming: Available post-broadcast via various platforms, including TikyO radiko, Spotify, Apple Podcast, and Amazon Music.

Featured Personalities

- Host: Miki Sumiyoshi, Former NHK Announcer, currently on TOKYO FM's "Blue Ocean".
- Guest Speakers:

- Yukiko Nishimura, Director, ASrid NPO
- Naotsugu Sakaguchi, Representative, Youth Hemophilia Club
- Makiko Matsuyama, Director, HAEJ NPO

Patient-Centric Approach

According to Izumi Yoshida, the Representative Director, "Patients with rare diseases often feel isolated due to the low number of individuals affected by similar conditions. CSL Behring’s 'Patients Focus' value emphasizes our commitment to connecting patient voices to society through this radio initiative, aiming to foster understanding and empathy for those affected by rare diseases."

RARE LiNK PROJECT

The RARE LiNK PROJECT is CSL Behring's initiative to connect the voices and experiences of patients, families, and healthcare professionals facing rare diseases, striving to enhance support for their needs. Using the slogan "We will not leave anyone alone," CSL Behring aims to identify, visualize, and disseminate these important voices to improve understanding and the environment surrounding rare diseases. For more information, you can visit RARE LiNK PROJECT.

Patients are encouraged to share their valuable experiences or concerns while living with rare diseases through an ongoing survey until the end of June 2026. You can participate through the following link: Patient Survey.

About CSL Behring

CSL Behring is a global biotechnology company focused on developing and providing innovative biological therapies for serious and rare diseases. In Japan, the company specializes in fields such as immunology, rare diseases, hereditary angioedema (HAE), and hemophilia. Since its inception, CSL Behring has consistently progressed, marking its 20th anniversary in 2020. Moving forward, the company aims to continuously contribute to enhancing medical care and the quality of life for patients and their families in Japan. To learn more, visit CSL Behring Japan.