#Japan #Tokyo #CSL Behring #Hereditary Angioedema #HAE Day

CSL Behring's Commitment to HAE Awareness on HAE Day 2023

On May 16, 2023, CSL Behring, headquartered in Tokyo, launched a series of initiatives aimed at enhancing awareness and understanding of Hereditary Angioedema (HAE) in observance of HAE Day. This rare disease leads to recurring swelling and severe pain in the skin, abdomen, and throat, and despite its serious implications, many patients face significant delays in diagnosis, persisting for extended periods before they receive the appropriate care. The emotional toll and anxiety associated with unexpected attacks affect both patients and their families profoundly.

CSL Behring has been dedicated to the HAE field for over 45 years, pioneering treatment options while also focusing on improving patient environments and promoting disease understanding. To commemorate HAE Day this year, CSL implemented four key initiatives:

1. Public Lecture

Recognizing the lengthy diagnostic process often faced by HAE patients, CSL held a public lecture on March 20, aimed at disseminating accurate knowledge about HAE and emphasizing the importance of early diagnosis. Over 100 attendees expressed a keen interest in understanding rare diseases, specifically HAE, highlighting the need for greater community awareness.

2. Social Media Campaign

In a bid to amplify the voices of patients, their families, and healthcare professionals, CSL launched a social media campaign as part of a global initiative that includes Japan. By sharing real-life experiences and insights from patients, the campaign works to foster understanding and raise public awareness regarding HAE.

3. Employee Walking Initiative

On May 15, more than 40 employees participated in a walking initiative in Aoyama and Omotesando, proudly wearing purple T-shirts—symbolizing HAE awareness. This activity was part of a global awareness effort led by HAEi under the hashtag #active4HAE, designed to further understanding of the disease in the community.

4. Information Sharing via RARE LiNK PROJECT

CSL published an interview article and video with Makiko Matsuyama, the representative director of HAE Japan, as part of the RARE LiNK PROJECT. In the interview, Matsuyama shared her personal experiences, having lost her husband before HAE was diagnosed and later discovering her daughter also suffers from the same condition. The shared content aims to illuminate the challenges faced by patients and their families in navigating life with HAE. The video and article can be viewed here.

CSL Behring remains committed to collaborating with patients, their families, healthcare providers, and communities at large to advance understanding of rare diseases like HAE and to improve the environments surrounding patients.

About HAE Day

HAE Day, observed annually on May 16, serves as an international awareness day to promote understanding and awareness of Hereditary Angioedema. It sees participation from patient organizations, healthcare professionals, and companies worldwide who share information and raise awareness about this condition. For more information, please visit the HAE Day website.

About RARE LiNK PROJECT

The RARE LiNK PROJECT seeks to connect the voices of patients, families, and healthcare professionals dealing with rare diseases, working towards greater awareness, understanding, and support for those affected. More details are available here.

About CSL Behring

CSL Behring is a global biotechnology company specializing in biological products for treating serious and rare diseases. Its mission is to deliver innovative therapies to patients worldwide, focusing on areas such as immune and rare diseases, HAE, hemophilia, and emergency care in Japan. For further information, visit CSL Behring.

About CSL Limited

Founded in 1916, CSL Limited (ASX: CSL, USOTC: CSLLY) is a global biotechnology enterprise with a rich portfolio of life-saving medicines, including treatments for hemophilia, immunodeficiency syndromes, influenza vaccines, and therapies for iron deficiency and kidney disease. With over 29,000 employees, CSL operates in more than 100 countries, continuing its commitment to saving lives through innovative biotechnology. Learn more about CSL's activities at CSL.com.