TV gala aims to raise awareness of rare diseases
With the theme of "1 in 10,000," a gala sharing the stories of patients with rare diseases, scientific and medical professionals' devotion to patient care, new drug development and governmental and social support such as favorable policies and voluntary programs is being aired by Shanghai Education TV Station on Thursday, Friday and Monday. Thursday is World Rare Disease Day.
Echoing a "share your colors" theme, patients will arouse public awareness of rare disease prevention and control, and support for patients and their families through talks and artworks.
The gala's "1 in 10,000" theme refers to rare diseases, which have an incidence of less than 1 in 10,000.
Diseases with an incidence of less than 1 per 10,000 are classed as rare diseases. There are over 7,000 worldwide. About 80 percent are inherited, affecting some 350 million people globally and over 20 million in China. About half of sufferers are children, with 30 percent of them dying before the age of 5. Rare diseases are also responsible for 35 percent of deaths in infants younger than a year old.
Most patients face difficulty in getting a correct diagnosis, and suffer a high rate of misdiagnosis and a lack of medication. So far, only 5 percent of patients in China can receive effective treatment. Globally, there's no therapy for over 90 percent of rare diseases.
Shanghai Rare Disease Prevention and Control Foundation teamed up with Shanghai Education TV Station, Shanghai Scientific Technology Development Foundation and leading hospitals to set up a volunteer team for the gala to provide lectures and free expert group consulting to help improve patients' life quality along with social awareness and support.
Two medics promote rare disease knowledge in a stage play.
To enhance awareness of rare diseases, especially among front-line medical staff, Shanghai Health Commission launched the nation's first provincial competition in promotion and education.
The final was held on Thursday with 22 teams from local hospitals, rare disease facilities and social organizations taking part.
Participants promoted knowledge with easy-to-understand methods that included speeches, talk shows and stage plays.
Officials said such events can improve society's understanding of rare diseases and enhance medical professionals' ability in precise diagnosis and treatment.
Medical professionals promote rare disease education.
Zhongshan Hospital also announced a new campaign on Thursday to explore more new approaches to the prevention and control of rare diseases.
Zhongshan Hospital announces a campaign to explore more new approaches to rare disease prevention and control.
"We will set up a special section for rare disease services and education on our hospital's official website and other social media platforms to help patients and families, launch international rare disease forums, carry out online exchanges, work out diagnosis and treatment methods and guidelines, and build a medical database of rare diseases through an AI-assisted system to support clinical judgment and patient management," said Dr Qian Juying, the hospital's vice president and director of its rare disease diagnosis and treatment center.
"Through the campaign, we want to look for new thoughts and innovative opinions of rare diseases and provide patients with more effective and advanced comprehensive treatment plans. We welcome the participation of more research institutes, medical facilities and non-governmental organizations in the movement, to bring more hope and chances for rare disease patients," she said.
