Takeda China and Yuyan HAE Patient Advocacy Group Launch 'Say No to Suffocation' Pop-up Exhibition for Hereditary Angioedema Awareness

SHANGHAI, May 16, 2021 /PR Newswire/ -- On the occasion of the 10th World Hereditary Angioedema Day, to further enhance public awareness of Hereditary Angioedema (HAE) and strengthen focus on the patient community, Takeda China has partnered with the China Hereditary Angioedema Care Center "Yuyan" (hereinafter referred to as "Yuyan") to jointly launch the "Say 'No' to Asphyxiation" World Hereditary Angioedema Day Educational Pop-up Exhibition. Through a multimedia exhibition combining text, graphics, and videos with online and offline interactive experiences, the event vividly presents HAE disease knowledge and the real-life patient journey, calling on all sectors of society to provide greater care and support for patients.Prof. Li Dingguo, Chairman of the Shanghai Rare Disease Prevention and Treatment Foundation; Prof. Guo Yinshi, Director of the Allergy Department, Renji Hospital, Shanghai Jiao Tong University School of Medicine; and Ms. Luo Fang (pseudonym), Representative of the Swift Group at the China Hereditary Angioedema Care Center, andDr. Chen Jie, Vice President and Head of Medical Affairs, Takeda Chinaand other guests jointly attended the opening ceremony of the exhibition.

Guests jointly unveil the disease awareness pop-up exhibition, empowering HAE patients to say "no" to suffocation (From left to right: Mr. Wu Zhongyi, Head of Rare Genetic and Metabolic Diseases Business Unit, Takeda China; Ms. Luo Fang, Representative of the Yuyan Care Center for Hereditary Angioedema in China; Prof. Li Dingguo, Chairman of the Shanghai Foundation for Rare Disease Care and Treatment; Prof. Guo Yinshi, Director of the Department of Allergy, Renji Hospital Affiliated to Shanghai Jiao Tong University School of Medicine; Dr. Chen Jie, Vice President and Head of Medical Affairs, Takeda China; Ms. Zhu Xiaojie, Head of Corporate Communications, Takeda China)

Hereditary angioedema (HAE) is a rare autosomal dominant genetic disorder. Due to a deficiency or functional impairment of C1 esterase inhibitor (C1INH), patients experience sudden, unprovoked acute edema in multiple body regions, including the extremities, face, genitalia, respiratory tract, and gastrointestinal mucosa, severely impacting their daily work, study, life, and emotional well-being. According to literature reports, the global prevalence is approximately 1 in 50,000 individuals.^[1]. Due to the rarity of the disease, currently in China, both the public and physicians have limited awareness of it, and patients frequently experience misdiagnosis and inappropriate treatment. Data indicates that,ChinaThe diagnosis rate of HAE patients in China is less than 5%.^[2]. On average, it takes patients 13 years from symptom onset to definitive diagnosis.^[3]。

Professor Li Dingguo, Chairman of the Shanghai Rare Diseases Foundationpointed out: “Many rare diseases, including HAE, share common challenges such as low disease awareness, underdiagnosis, and convoluted patient diagnostic pathways. Public awareness and understanding of these related rare diseases urgently need to be improved. I am pleased to see that this pop-up science education exhibition utilizes more accessible and intuitive artistic displays to help visitors gain a clearer understanding of HAE. This initiative will help raise awareness of the disease among both the general public and clinicians, ultimately enabling HAE patients to achieve early diagnosis and avoid unnecessary delays in seeking appropriate care.”

Hereditary angioedema is unpredictable, and clinical manifestations during attacks are severe, potentially even life-threatening. The most fatal manifestation is mucosal edema of the upper respiratory tract, which can rapidly progress to cause dyspnea or asphyxia. Without timely emergency intervention, death from asphyxiation can occur within 4.6 hours.^[4]. According to statistics,ChinaIn China, 58.9% of HAE patients have experienced laryngeal edema.^[5], its case fatality rate can reach up to 40%^[1]. In 2018, HAE was included inChinawithin China's 《Catalogue of the First Batch of Rare Diseases》^[6]。

Prof. Guo Yinshi, Director, Department of Allergy, Renji Hospital, Shanghai Jiao Tong University School of Medicinestated: “Hereditary angioedema (HAE) is a rare disease with potentially life-threatening risks that severely impacts patients' quality of life and physical and mental health, necessitating heightened attention and standardized diagnosis and treatment. Current authoritative clinical guidelines both domestically and internationally consistently recommend long-term prophylactic treatment for HAE patients to mitigate the disease's impact on daily life and prevent life-threatening edema episodes. During acute HAE attacks, effective on-demand treatment should be administered to reduce attack-related complications and mortality.”

To date, the survival and clinical management of HAE patients in China remain far from satisfactory. Patients and their families commonly face challenges such as high misdiagnosis rates and substantial long-term treatment burdens. Meanwhile, due to delayed diagnosis or the limited efficacy of existing treatment regimens, patients are chronically exposed to the imminent risk of fatal asphyxiation caused by sudden upper airway mucosal edema. Previously, targeted therapeutic agents for HAE were lacking in China, and existing treatment options offer limited efficacy in controlling attacks and are associated with a high incidence of adverse reactions.^[7], patients have an extremely pressing need for innovative treatment options.

Ms. Zhang Nan, Director of the Swift Care Center for Hereditary Angioedema in ChinaIndicates：“Due to frequent, unpredictable acute edema attacks, HAE patients are unable to work or study normally, severely impacting our quality of life; in particular, the fear of laryngeal edema episodes leaves us living in constant anxiety and fear. Through this exhibition, we hope to enable the general public to ‘see’, ‘hear’, and ‘feel’ the genuine voices of HAE patients as a minority group, to provide our community with greater understanding and support, and to join us in saying ‘no’ to suffocation.”。”

As one of the representative enterprises in the rare disease sector and a co-organizer of this event, Takeda China, guided by a "patient-first" philosophy, remains dedicated to meeting the practical needs of China's rare disease patient community, including those with HAE. Over the past year, prioritizing patients' urgent needs, Takeda China has accelerated the introduction of two targeted innovative drugs to China—one for long-term prophylaxis of HAE and the other for the management of acute attacks—helping HAE patients achieve the treatment goal of "zero attacks." Furthermore, Takeda China has collaborated closely with rare disease patient organizations represented by "Yuyan" to jointly raise public awareness of rare diseases such as HAE, promote the robust development of China's rare disease sector, and help usher in a brighter future for the rare disease patient community in China.

[1] National Health Commission, Office of the Expert Committee on Diagnosis, Treatment and Management of Rare Diseases (Peking Union Medical College Hospital). Guidelines for the Diagnosis and Treatment of Rare Diseases (2019 Edition). 2019, 38–189

[2] Reuters (2017). For millions of Chinese with rare disease, some relief in sight. Online access

[3] X u YY, e t al. Eur J Derma tol. 2013, 23(4):500-4.

[4] Xu YY, et al. Ann Allergy Asthma Immunol. 2014, 112(6):539-544

[5] Xu YY, Zhi YX, Liu RL, et al．Upper airway edema in 43 patients with hereditary angioedema [J]．Ann Allergy Asthma lmmunof，2014, 112(6): 539-544.

[6] National Health Commission, Ministry of Science and Technology, Ministry of Industry and Information Technology, National Medical Products Administration, National Administration of Traditional Chinese Medicine. Catalog of the First Batch of Rare Diseases, Guo Wei Yi Fa [2018] No. 10.

[7] National Health Commission, Office of the Expert Committee on Diagnosis, Treatment, and Management of Rare Diseases (Peking Union Medical College Hospital). Guidelines for the Diagnosis and Treatment of Rare Diseases (2019 Edition). 2019, 38 – 189.

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