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CSL Behring's RARE LiNK PROJECT: Strengthening Community Ties for Rare Disease Patients

CSL Behring, headquartered in Minato, Tokyo, has announced the launch of the RARE LiNK PROJECT, effective from July 28, 2025. This initiative aims to connect the voices of individuals affected by rare diseases, fostering a supportive environment where everyone can share their experiences and needs. The project's motto, 'We won’t let anyone feel alone,' emphasizes the importance of community in addressing the unique challenges faced by those living with rare conditions.

The Challenges of Rare Diseases

Rare diseases, characterized by having fewer than 50,000 patients, often leave many individuals feeling isolated. The lack of community and specialist support can create significant emotional and logistical challenges. Patients and their families frequently struggle to connect with others who understand their situation, leading to feelings of loneliness and despair. Recognizing these challenges, the RARE LiNK PROJECT aims to bridge the gap and foster connections among patients, families, and healthcare professionals.

Key Components of the RARE LiNK PROJECT

The RARE LiNK PROJECT is structured around three main pillars that will drive its operations:

1. Collecting Voices: The initiative focuses on actively gathering the experiences and insights of patients, their families, and healthcare providers. Through a dedicated web platform for the project, input will be solicited from stakeholders, which will serve as a foundation for future activities. This approach ensures that their voices are heard and valued.

2. Visualizing Voices: Once collected, the input will be analyzed both quantitatively and qualitatively. This evaluation will make previously hidden challenges and needs visible, allowing the broader community to understand and empathize with the experiences of those living with rare diseases.

3. Communicating Voices: The project will leverage various media and communication channels to disseminate the collected voices to society. This outreach aims to enhance awareness and empathy for rare diseases, ultimately leading to concrete forms of support from both individuals and organizations.

A Commitment to Progress

CSL Behring is a well-established leader in the research and development of innovative treatments for rare conditions. With the launch of the RARE LiNK PROJECT, the company is committing to further collaboration with diverse partners to enhance its impact. By evolving and accelerating its efforts, CSL Behring aims to tackle the challenges faced by those affected by rare diseases more effectively.

How to Get Involved

CSL Behring invites everyone to lend their voices to this important cause. Individuals affected by rare diseases or who have insights into these conditions are encouraged to share their experiences and aspirations through the project's dedicated platform. Their perspectives are invaluable in shaping a supportive community and will play a crucial role in informing future initiatives.

For more information on the RARE LiNK PROJECT and to participate, visit the project’s dedicated website. Together, we can foster a more empathetic and connected community for those living with rare diseases.

About CSL Behring

CSL Behring is a global biotechnology firm specialized in the development of biopharmaceuticals for the treatment and prevention of severe and rare diseases. With a mission to deliver innovative therapies to patients worldwide, the company has established a strong presence in Japan, focusing on immunological and rare conditions, hemophilia, and critical care. Celebrating its 20th anniversary in 2020, CSL Behring continues to contribute to the enhancement of healthcare quality in Japan and the lives of patients and their families. For more details, visit CSL Behring’s official website.

Learn More About CSL

CSL Limited (ASX: CSL, USOTC: CSLLY) has an extensive portfolio of life-saving medications, including treatments for hemophilia and vaccines. Since its inception in 1916, the company has focused on using the latest technologies to save and improve lives. With over 32,000 employees globally, CSL operates in more than 100 countries, consistently striving to enhance patient outcomes through groundbreaking research and operational excellence. For more information on CSL’s initiatives, follow them on Twitter or visit CSL's website.