February 28 is International Rare Disease Day. At any time, a total of 263-446 million patients worldwide are facing the challenge of rare diseases, and among the more than 7,000 rare diseases currently defined, neurological rare diseases account for more than half. In 2018, five ministries and commissions in China released the first batch of rare disease lists. Among the 121 diseases, there are 39 rare diseases of the nervous system, accounting for 32.2%.
In order to better promote the development of rare disease diagnosis and treatment and improve patients’ awareness of the disease, on February 26-28, the National Neurological Diseases Medical Center, the Pan-Yangtze River Delta Neuromyopathy Alliance, and the Panchang Co-sponsored by the Triangular Demyelinating Disease Collaborative Group, Huashan Rare Disease Center and Haodafu Online, 45 doctors from 21 large public tertiary hospitals across the country will carry out free live free clinic activities on Haodafu Online, mainly for motor neuron disease , peripheral neuropathy, myasthenia gravis, polymyositis, periodic paralysis, muscular dystrophy, metabolic myopathy, inflammatory demyelinating disease of the central nervous system, spinocerebellar ataxia, hepatolenticular degeneration, and neurological Patients with rare diseases such as genetic diseases, gynecological endocrinology, and fetal medicine prenatal diagnosis.
The traditional free clinic is integrated with the online live broadcast mode, which can more easily help patients solve their needs for diagnosis and treatment. For patients, this free clinic can not only provide simple treatment suggestions, but also pave the way for subsequent offline treatment, helping to provide “one-stop” high-quality clinical diagnosis and treatment services for patients with a variety of rare diseases; for healthy people, This online live free clinic can also help everyone to enrich the knowledge of rare diseases and pay attention to the existence of rare diseases.
This live free clinic event is the first large-scale online live event with the theme of “rare disease” in China. It will be delivered to patients with rare diseases nationwide, effectively solve the problem of difficult medical treatment for the common people, and help a healthy China.
(Operation: Qi Yu)