Novartis China and China Alliance for Rare Diseases Launch 'Aurora Project' to Support PNH Patients

China Finance and Economics News, November 8th: Yesterday at the 7th CIIE, Novartis China announced the launch of the cooperation project "Aurora Plan" with the China Rare Disease Alliance.

Both parties hope to exchange and cooperate on raising social awareness and health literacy regarding PNH (paroxysmal nocturnal hemoglobinuria), a rare disease, in order to help more PNH patients return to normal life as soon as possible.

Leo Li, President and Managing Director of Novartis China, expressed that Novartis is very pleased to establish cooperation with the Rare Disease Alliance. PNH is a rare blood disorder, and in recent years, Novartis has actively engaged in collaborations with Chinese PNH patient organizations and experts in this field to promote discipline development and upgrade the diagnosis and treatment model for PNH in China. "At last year's CIIE, Novartis launched an in-depth collaboration with the PNH Care Home. This year, we are delighted to initiate cooperation with the Rare Disease Alliance. As a pharmaceutical company focused on innovative medicines, Novartis consistently fulfills its commitment to 'patient-centricity,' continuously increasing R&D investment, actively enhancing drug accessibility, and joining hands with all parties to bring more treatment options and hope to even more patients."

It is reported that the two parties will explore training programs for medical professionals such as clinicians and pharmaceutical experts, aiming to improve the diagnosis and treatment capabilities for PNH, ensuring patients receive the latest and most effective treatment options. In the future, Novartis and the Rare Disease Alliance will also explore more diversified cooperation models, hoping to bring more comprehensive and effective support and help to the PNH patient community, delivering truly valuable changes and care.

Li Lin Kang, Executive Chairman of the China Rare Disease Alliance, stated that PNH is known as "the rare disease within rare diseases." The China Rare Disease Alliance actively participates in promoting care for PNH patients and addresses issues such as insufficient clinical awareness and significant regional disparities in diagnosis and treatment levels. "The prevention and treatment of rare diseases is a systematic project that cannot succeed without the joint efforts of all parties. Novartis, as a pharmaceutical company focused on innovative drugs, has always been committed to enhancing patient care and improving their quality of life. In June 2021, under the joint promotion of the Alliance and Peking Union Medical College Hospital, an innovative drug for treating PNH was successfully introduced, marking a breakthrough journey in China's compassionate use of PNH medication."

PNH is a chronic, progressive, and life-threatening rare blood system disease, with main clinical manifestations including anemia, paroxysmal hemoglobinuria, bone marrow hematopoietic failure, and thrombosis. PNH can occur at any age but is more common in people aged 30-40, imposing a lifelong heavy burden on young and middle-aged adults.

"Remarkable progress has been made in the treatment of PNH in China. In the new era of targeted PNH therapy, the advent of innovative complement inhibitors is driving us toward higher treatment goals. However, PNH patients still face many challenges," said Zhang Liansheng from the Second Hospital of Lanzhou University. Due to the unique and rare nature of the disease, issues such as difficult diagnosis and high costs continue to trouble PNH patients and their families. The collaboration between Novartis and the Rare Disease Alliance brings new hope to more patients. It is believed that with the joint efforts of all parties, PNH patients will experience an improved quality of life and return to a better life.