Foundation consolidated over time and for a rosy future | 2023 China Conference on Rare Diseases closed successfully
CANbridge Pharmaceuticals, Inc. (“CANbridge,” stock code 1228.HK), a global biopharmaceutical company, with a foundation in China, committed to the research, development and commercialization of transformative therapies for rare diseases and oncology indications.
The “2023 China Conference on Rare Diseases” which was jointly organized by China Alliance for Rare Disease, the Chinese Red Cross Foundation and the Office of the National Network, was successfully held in Beijing. During the five-day event, professionals from all over the country engaged in in-depth discussions on a wide range of topics related to rare disease patients. These topics included policy formulation, clinical diagnosis and treatment, drug R&D, and drug accessibility. The conference, themed “People-Centered Joint Development and Sharing” marked the beginning of a new journey in the prevention, treatment and accessibility of rare diseases. The event has attracted over 100,000 individuals both online and offline.
After an eventful five days of engaging online and offline activities, the conference concluded with a heartfelt closing ceremony, aimed at expressing gratitude towards all the individuals and institutions who have shown care and support for patients with rare diseases.
In 2018, the National Health Commission, along with four other authorities, jointly issued the “First List of Rare Diseases”. This marked a significant milestone and demonstrated the growing attention from the state and various sectors of the society towards the prevention and treatment of rare diseases. In the same year, China Alliance for Rare Disease was established, aiming to consolidate resources and enhance China’s rare disease diagnosis, treatment and accessibility system.
After a span of five years, marking the publication of the second list of rare diseases, significant and uplifting improvements have occurred in the living conditions and overall quality of life for Chinese patients with rare diseases. During the closing ceremony of the 5th Anniversary of the China Conference on Rare Diseases and the “Light of Life” Public Welfare Gala Evening held on October 24, 2023, a remarkable moment unfolded. Guoguo, a spinal muscular atrophy (SMA) patient who touched the hearts of thousands of netizens with a song “Grass” on CCTV, and Feng Jiamei, a singer and the founder of the SMA Patients’ Organization, delivered a powerful singing performance that deeply moved all the attendees.
Li Linkang, the executive director of China Alliance for Rare Disease, warmly reminisced about the Alliance’s progress and growth over the past five years. With courage and determination, Li ensured the Alliance would continue to move forward and collaborate with all stakeholders to establish a unique rare diseases prevention and treatment system with Chinese characteristics.
Dr. James Xue, the founder, chairman and CEO of CANbridge, was present at the closing ceremony of the 2023 China Conference on Rare Diseases. During the “Light of Life” Public Welfare Gala Evening for the 5th Anniversary of the Alliance, esteemed leaders recognized the positive contribution made pharmaceutical enterprises in advancing the development of China’s rare disease prevention and treatment system over the past five years. Dr. James Xue reflected on the establishment and development of China Alliance for Rare Disease. In July 2018, he was invited to participate a seminar on innovative drugs for rare diseases in Shanghai, where influential academic leaders and advocates for rare diseases, such as Li Linkang, Zhang Shuyang, Song Ruilin, Li Dingguo, Liu Junshuai and James Xue, expressed the need for a reputable and representative organization that could advocate for the interests of various stakeholders in the field of rare diseases. Subsequently, they collectively initiate the formation of the Alliance. As witnesses to this significant moment, Dr. James Xue and CANbridge have been closely associated with the Alliance, actively engaging in efforts related to rare diseases-related diagnosis, treatment, prevention and accessibility. They have witnessed China’s progress in addressing rare diseases over the past five years.
Throughout the past five years, the China Alliance for Rare Disease has always been patient-centered. And CANbridge, as a China-based pharmaceutical company specializing in innovating drugs for rare diseases, has always adhered to the principle of being “patient-centered”. At the Public Welfare Gala Evening, numerous attendees were moved to tears as family members of children with rare diseases shared their experiences of helplessness in facing the diagnosis and the lack of available drugs. Dr. James Xue expressed that CANbridge’s mission and inspiration revolve around addressing the issue of drug inaccessibility in rare diseases. With over a decade of commitment to rare diseases, CANbridge has achieved significant achievements. The company will persistently strive to explore cutting-edge technologies in areas such as enzymes, protein complements and genes therapies, aiming to provide more life-saving treatment options for Chinese patients with rare diseases.
A group photo of Dr. James Xue and the founding team of the Alliance
During a charity donation ceremony that coincided with the closing ceremony, the organizers made a significant announcement, revealing that all the proceeds generated from online viewership of the conference would be donated towards the diagnosis and treatment of rare diseases, thereby reaching the pinnacle of patient care actions during the event. Moving forward, the China Alliance for Rare Diseases and the Beijing Society for Rare Diseases-Related Diagnosis, Treatment and Accessibility will adhere to the “patient-centered” concept. They will collaborate with a diverse range of stakeholders to pool resources for patients with rare diseases. The collective efforts will be dedicated to addressing the “urgent needs, difficulties and concerns” faced by patients with rare diseases, ensuring their well-being remains at the forefront of their endeavors.
About CANbridge Pharmaceuticals Inc.
CANbridge Pharmaceuticals Inc. (HKEX:1228) is a global biopharmaceutical company, with a foundation in China, committed to the research, development and commercialization of transformative therapies for rare disease and rare oncology. CANbridge has a differentiated drug portfolio, with four approved drugs and a pipeline of 10 assets, targeting prevalent rare disease and rare oncology indications that have unmet needs and significant market potential. These include Hunter syndrome and other lysosomal storage disorders, complement-mediated disorders, hemophilia A, metabolic disorders, rare cholestatic liver diseases and neuromuscular diseases, as well as glioblastoma multiforme. The CANbridge Next-Generation Innovation and Process Development Facility is developing novel, potentially curative, gene therapies for rare genetic diseases, including Pompe disease, Fabry disease, spinal muscular atrophy (SMA) and other neuromuscular conditions, and collaborates with world-leading researchers and biotech companies.
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