Rare diseases affect millions worldwide, presenting significant challenges in diagnosis and treatment. At the 2024 China Conference on Rare Diseases, groundbreaking advancements in China were unveiled that promise to change the landscape of rare disease management.
Zhang Shuyang, president of Peking Union Medical College Hospital, shared that the average diagnosis time for rare diseases in the Chinese mainland has been reduced from four years to less than four weeks. Additionally, medical expenses have plummeted by 90%, making treatment more accessible. Public awareness of rare diseases has also soared from 31% to 69%, a substantial increase that underscores the nation's commitment to tackling these conditions.
Many rare diseases stem from congenital genetic factors closely linked to birth defects. Yu Yanhong, an official from the National Health Commission of China, highlighted that there are over 8,000 known birth defects, many classified as rare diseases. In 2023, China achieved a more than 50% decrease in infant and under-five mortality rates caused by birth defects compared to a decade ago, with significant reductions in major conditions like neural tube defects and Down Syndrome.
Dr. Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders, praised China's efforts, stating, \"China has made so much progress in genetics and genomics. There are more gene therapy clinical trials in China than anywhere else in the world.\" Early diagnosis is crucial for patients, as timely treatment can prevent irreversible symptoms. Beyond medical care, rare diseases often have profound emotional, social, and financial impacts on families.
Experts are also identifying a growing number of rare diseases affecting older adults. Diagnosing these conditions is increasingly challenging, as symptoms can be mistaken for normal aging processes, delaying crucial interventions.
Reference(s):
cgtn.com
