On February 29, 2024, Shenzhen Medical Academy of Research and Translation (SMART) and Shenzhen Bay Laboratory (SZBL), as the joint-laboratory signatories, participated in the launch ceremony of the Innovation and Development Institute for Rare Disease Diagnosis and Treatment of Peking Union Medical College Hospital (PUMCH) and signed a strategic cooperation agreement with PUMCH to build a Joint Center for High-end Research on Rare Diseases. Yan Nieng, Founding Director of SMART and Director of SZBL, along with Zhang Shuyang, President of PUMCH, signed the agreement representing the three entities. Tu Huan, Vice Director of SMART and SZBL, was present as a witness to this momentous occasion.
February 29, 2024 marks the 17th International Rare Disease Day. Current statistics indicates that there are over 7,000 rare diseases recognized globally, impacting around 300 million individuals across the world. In China alone, the patient count for rare diseases has surpassed 20 million. Presently, a mere 1% of these conditions have access to effective treatments. The rarity of these diseases means that they have extremely low incidence rates, making the hurdles in drug development significantly higher than those for more prevalent illnesses. Moreover, pharmaceutical companies often exhibit limited interest in developing drugs for rare diseases, primarily due to the challenges in matching the revenue generated by medications for common diseases.
Driven by the goal of solving real clinical problems and practicing scientific responsibility, SMART and SZBL are committed to addressing global medical challenges. They have conducted prospective basic research, translational research and new drug development for rare diseases.
To further bridge the bidirectional pathway between basic research and clinical application, on February 29, 2024, SMART and SZBL, as the joint-laboratory signatories, participated in the launch ceremony of the Innovation and Development Institute for Rare Disease Diagnosis and Treatment of PUMCH and signed a strategic cooperation agreement with PUMCH to build a Joint Center for High-end Research on Rare Diseases. Yan Nieng, Founding Director of SMART and Director of SZBL, along with Zhang Shuyang, President of PUMCH, signed the agreement representing the three entities. Tu Huan, Vice Director of SMART and SZBL, was present as a witness to this momentous occasion.
According the agreement, the Joint Center for High-End Research on Rare Diseases will see the three parties harness their collective strengths in fundamental research and clinical medicine. Together, they will address the evolving needs and interdisciplinary trends within the rare disease sector. The collaboration aims to co-set the research directions in the field of basic research on rare diseases, foster an innovative talent training program, and pool scientific and technological resources to accelerate the transformation of scientific and technological achievements in rare diseases. Furthermore, the tripartite initiative will establish a comprehensive destination for rare disease diagnosis and treatment, a highland for rare disease scientific research, a foundation for drug R&D, and a pilot zone for rare disease medication access. The ultimate goal is to ensure that individuals with rare diseases receive prompt diagnoses and interventions, thereby enhancing their quality of life.
At the meeting, Academician Yan Nieng was invited to give a keynote speech titled "From Rare Diseases to Basic Research". She explained the protein structure that senses cholesterol levels in cells and provided a captivating account of her team's journey in this field.
