Eyelid drooping, blurred vision, unclear speech, weak chewing, difficulty swallowing, and limb weakness are common symptoms of myasthenia gravis patients. Once a crisis occurs, it can cause breathing difficulties and endanger the patient's life. June 15th every year is the "6.15 Myasthenia Gravis Care Day" initiated by Chinese patients. Recently, the 6th China Myasthenia Gravis Congress, guided by the China Rare Disease Alliance and hosted by the Beijing Aili Myasthenia Gravis Rare Disease Care Center (hereinafter referred to as "Aili Care Center"), was held in Beijing. 80% of patients can return to normal life through systematic treatment. Myasthenia gravis (MG) is an autoimmune disease caused by nerve muscle junction conduction disorders. This disease adds about 10000 people annually in China, and anyone can suffer from it later, affecting overall skeletal muscle strength. In 2018, generalized myasthenia gravis was included in the first batch of rare diseases list of the country. Zhang Hua, the chief physician of the Department of Neurology at Beijing Hospital, was one of the earliest doctors in China to diagnose and treat myasthenia gravis. His Beijing Hospital was the first hospital in China to have both a neuroimmune ward and a neuroimmune disease laboratory, and has treated over 20000 patients with myasthenia gravis. On the 15th, Zhang Hua stated in an interview with China News Health that myasthenia gravis may occur in all age groups. It is generally believed that young and middle-aged people have the highest incidence rate, while the elderly and children have low incidence rate. "In recent years, the incidence rate of the elderly has gradually increased." Zhang Hua pointed out that in the past, the proportion of elderly people in the entire population of myasthenia gravis patients in China was not more than 5%, but now it is basically 10% -20%. He said that on the one hand, the reason may be that after the socio-economic development, the whole society has paid more attention to the health issues of the elderly, and more elderly people have been admitted to hospitals for treatment. On the other hand, it is also possible that the number of elderly patients with myasthenia gravis has indeed increased. Zhang Hua introduced that in the field of neuroimmunology, myasthenia gravis is a disease that receives more attention. In recent years, with the increasing awareness of this disease in the medical community and the emergence of new treatment methods, the mortality rate has decreased. "More than a decade ago, the mortality rate of myasthenia gravis was very high. Once a 'crisis' occurred, the mortality rate was at least 30-50%. In our ward, the mortality rate has dropped to below 1%. That is to say, myasthenia gravis is no longer an easily life-threatening disease. With only systematic treatment, 80% of patients can return to normal life.". Professor Dong Dong, Associate Researcher at the Shenzhen Research Institute of the Chinese University of Hong Kong, gave a report titled "Ten Year Peer Review: A Real World Data Study Based on the Aili Myasthenia Gravis Patient Registration System". This is also one of the largest research projects in the field of rare diseases in China, with the largest sample size of patients. Dong Dong introduced that, for example, compared with the results of the 2014 survey, the medical dilemma of patients being prone to misdiagnosis and difficult to treat has been resolved to a certain extent. However, the pressure of employment, marriage, and life has gradually become prominent, especially the greater employment difficulties. The need for patients to reintegrate into society is becoming increasingly urgent. About two-thirds of patients with myasthenia gravis are women. Dong Dong said that previous surveys have shown that the quality of life and daily living abilities of female patients are worse than those of male patients. Taking employment as an example, under the same educational background, the latest survey found that the unemployment rate of female patients is 46%, nearly half of whom cannot find employment, while the unemployment rate of male patients is 37%. Dong Dong introduced that through the existing large database, the research team has developed an evaluation model, which clearly shows that when patients with myasthenia gravis have complete social support, their mental state is better, their medication confidence is enhanced, and medication compliance is improved. This is of great significance for optimizing the self-management, patient social services, and public welfare of myasthenia gravis patients. Unfortunately, recent research reports have shown that 74.7% of MG patients have varying degrees of depression and anxiety, and 32% of patients have moderate to severe anxiety and depression. Public welfare organizations help match medical and patient resources. Patient Nie Zheng (pseudonym) is 18 years old, but he has a 15 year medical history. He told Zhongxin Health that at the age of three, due to eye abnormalities, his parents took him to a hospital in Sichuan for treatment. At that time, he was diagnosed with myasthenia gravis by doctors, and then the family returned to their hometown in Yunnan, where they experienced multiple relapses. Once, a variety show came to Nie Zheng's hometown of Yunnan for filming and filming. Actor Zhang Xiaolong noticed his symptoms and helped him contact experts in Beijing. He also invited experts to Kunming to perform surgery on Nie Zheng. After years of systematic treatment, Nie Zheng now looks almost indistinguishable from ordinary people. Nie Zheng also joined the charity organization of Aili Care Center, providing assistance to other patients to the best of his ability. How to enable more patients like Nie Zheng to receive timely treatment from hospital experts is what Aili Care Center has been doing. According to the conference news, based on the cooperation with more than 300 doctors nationwide and the services provided to 18000 patients over the past 10 years, the Aili Care Center has launched the "Multi disciplinary Medical Public Welfare Map for Myasthenia Gravis Patients" to digitally address the basic needs of patients seeking hospitals and doctors. The first batch included more than 90 doctors from national tertiary public hospitals. Qing Zhao, founder and director of Beijing Aili Myasthenia Gravis Rare Disease Care Center, stated that he will continue to play the role of a multi-party resource coordinator in the future, looking forward to gathering more care and working with partners from all walks of life to create a better future for myasthenia gravis patients. (Lai Xin She)